Family and Caregiver Schizophrenia Discussion Forum

Daughter is in group home doing well

So my daughter is in a group home and doing well. This is not a permanent placement. She is has Sz. I would like to see her come home but I am a little afraid. I feel what if I do something wrong or I can’t keep the schedule she is on or… I’m afraid of a relapse. What are some things I should look into doing to be the most help I can be. With out being the controlling parent I was before. I want her to realize she is not a 30 year old child that needs to be taken care of. I know that is the way I have always treated her, and I know I am a big part of the problem. I just not sure what to do when they let her out. Any Ideas on how to have a new start a good start? Its really hard right now to get into any therapist it a 2-3 month wait right now.

ttt1 I can tell you that before my son was discharged from a community care unit, the social worker helped us to have a facilitated family discussion where she used a whiteboard to talk through ‘house rules’'and establish what was required by us to have him as a young man of 31, to come back home to live (they said he was not capable of living independently and I looked at available housing options and was not comfortable for him to go there). It was one of the best things ever to have someone else run that discussion and to record what we discussed so we were all very clear about what was expected and how everything would work. Perhaps if you know someone who has facilitation skills and an understanding of mental illness it might be worth considering? It certainly gave us the fresh start we needed, and almost 4 years down the track it it working well with no further admiisions to hospital. My son cooks dinner one night a week and we continue to work with him to practice everyday living skills, like scheduling for him to do his own laundry, change sheets, clean the shower etc. We’re happy for him to continue living here but know that the day will come when he will need to manage on his own so we’ve got to practice with this in mind. I hope this idea may be helpful? Wishin you all the best

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We also had a social worker who helped “place” my daughter back in my home after her hospitalization. She went to out-patient classes put on by the mental health facility. She hated them and quit. She was court ordered to stay on her meds, but it was a struggle for the first few months. I was ALWAYS afraid to “do something wrong” or that she would relapse. Eventually, things settled down. I think the key was getting her to the local office of the State Disability service for evaluation and training for job placement. She wanted a job, I found the office, they evaluated her, mentored her and found her a job. And she agreed to “house rules” if she was going to live in my home. She looked at the local shelters and decided home with me as the “boss” was better than a shelter. It was, by far.

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Go to therapy for yourself first…start and the when daughter gets there…my daugjter very controlling…i thought she was sexually abused and caused this as no one else is controlling…( except dad is selfish and maybe narc)… figure put why u are controlling and try to change that about you…im.so non controlling…i just go with flow…perhaps biblr? Give god control?.

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These are all great things to do, thank you so much, and I’m glad to hear others had the same worry as me. I am glad to have all of your advise. I’m making a list of things. Its always good to get as much knowledge (or ways to deal with things). With knowledge maybe I will have less fear, naw probably not. We had such a good talk this week end. Hope you don’t mind if I share. She said it was okay to share. She told me of some of the stuff she saw during a bad episode, she knows now they were delusion. She was in the hospital and she walked into a room with 3 other patients and she thought one didn’t look right so she walked out. Then she went back in and the girl/women was now a headless man, just sitting in a chair. I told her I would have been so scared she said it didn’t scare her because she new the other two girls were witches just messing with here head. She now knows it was all a delusion.
I asked her why she had stopped bathing and she said she had a fear of water that she was going to suffocate or drown she said maybe it was like rabies she also admitted to just laziness. Then on the other hand when she would take the 3- 5 hr bath/showers she said that no mater what, she could not get clean no mater how hard she scrubbed or how hot she got the water she could not get clean. She says she still hears the voices (two voices) but they don’t get her so excited anymore. I so wish they would go away.!! Thank you so much for the info hope and pray things keep going well for all of you.

Wow, it is good she tells you…my son now hides it. When he was 12 he said he saw a drawing of a pretty complex devilish thing. He got excited and came to show me, and said “mom, this is what I have been seeing in the backyard”. He said he has seen them since he was 3, that they put their finger over their mouths as to motion to SHH, or shush, (hide that they are there). I wondered then , is it schitzophrenia?, or he sees devils, and I need to get spiritual help. I did take him to church, where they prayed, he did get involved at a good church and became baptised. He now rejects it all, and has no belief in god. He became schitzophrenic and has had hallucinations, but doesnt say what they are. He did get angry a lot and think I was saying mean things to him. He would snap at me “What did you say?”
He also didnt bathe, or eat much, and was thinking I might poison him. I saw this girl on a u tube video who said she was schitzophrenic, and every tie she would eat, voices would tell her to stop or shell get fat.

C11, The first episode my daughter had I could have sworn she was posessed it was so scary. I used to watch scary movies like that I can’t anymore, no loss. I have also wondered about things like that, my daughter even asked me to take her and have an exorcism during a bad episode. I can truly see why people would wonder if it is a spiritual thing or a mental thing. That would have been so scary at such a young age and for you also. When she told me she still hears voices still and she is trying to figure things out with her voices, I wasn’t to happy but I wanted her to be able to talk to me, I just said, their are things going on in my head I can talk about that you won’t understand completely because you are not me, and the things you are hearing you can talk about but I will not be able to completely understand because I am not you. But that she can talk to me about it when ever she wants. I know she wants me to be able to accept it all. Its definitely a work in progress for me, if I do accept am I feeding into her delusions. You know it hard to explain a diagnosis of Sz their are no blood test or scans that can say here is proof. Its all based on the way they act. Thank you for the reply. C11

I think it.good.to.accept it and listen to her because if she tells you what is going on you know so u can help.her distinquish…my.older son visited and first didnt believe me my.other son had sz. Them after seeing his behaviour he said he seems devil possessed and he and a friend tried to pray…but he didnt get better…it is like.they.could have devils and they push down their personality…its so sad…i get depressed and dont want to do much either since it happened…that and now masks and .covid shutdowns…

You can accept what your loved one feels without agreeing.

My daughter still talks to her “invisible friends”. She knows there are 6 or 7 beings without bodies that at times try to cause her various body pains and mental anguish, and 2 beings who are protecting her from the other 6 or 7. She has tried to let one of them talk to me through her, and I kindly explained to her (and said that she could tell “them”) that I cannot talk to her friends through her as I have no way to evaluate who I am talking to. I explained in a way that she could accept. I personally feel that it is better for her to tell me whatever is going on with her than for me to ignore or not know what she wants to talk about.

Her psychiatrist told me that the voices and delusions may NEVER go away, that for most patients of hers, they don’t go away totally. She urged me to never tell my daughter that they weren’t real to me. But they are VERY real to my daughter. Had I disagreed or tried to point out she was wrong, she would have closed herself to me.

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Old Lady Blue,
I am perplexed by your daughter’s psychiatrist saying that voices and delusions may never go away.
If that is the case, then how do you measure whether or not medication is working? How do you measure progress ? How do you decide what medication is right and at what dose?

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@j9sit I’m going to jump in for @oldladyblue and reiterate what I’ve said in the past: recovery is NOT the absence of symptoms, but rather the development of coping skills to manage symptoms to make them less burdensome so you can better deal with challenges of life— including and especially your illness.

I feel in relabeling neuroleptics or “tranquilizers” as antipsychotics, drug companies did a great disservice to caregivers and diagnosed alike by overselling and raising expectations of outcomes of medication treatment.

I recently read an observation of a mental health care worker on the Quora app/site in response to a question whether people with SZ get better, worse or stay the same over time. In typical internet fashion, the “meme-y” short answer was— yes. That is: some get worse, some get better, some stay the same. His observation from experience was people who developed symptoms earlier in life (before 18 I believe was his metric) tended to do poorly and decline; people developed symptoms between 18-25 tended to experience more “moderate” symptoms which tended to stay about the same, and people (like myself) who developed symptoms after 25 tended toward more mild symptoms that improved. From anecdotal experience, this observation rings true (with a few qualifiers) and I have a few hypotheses why this might be the case.

As to qualifiers, my recollection from Dr. Fuller Torrey’s book, Surviving Schizophrenia, another indicator of prognosis is a diagnosed person’s initial response to neuroleptic treatment. If they respond well to initial treatment, then chances are good they’ll do better over time. I’ll also mention that people who tolerate and respond to Clozapine seem to do better over the long term than other drugs. Clozapine is more of a front-line drug in the EU and Britain rather than a drug of last resort in the States which seems to me a pragmatic choice in a less litigious society with more accessible and reliable follow-up care.

My recollection is Torrey views neuroleptics as a form of supportive care for people with schizophrenia— that is they tend to slow the degeneration of brain tissue he observed in his seminal work of brain imaging in identical twins with (and without) schizophrenia. So even if you might not observe improvement, continuing medication regardless may be a good strategy to slow or stop further degeneration that could lead to worsening symptoms overall.

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Hi @j9sit , thanks for your questions, and I don’t mean to be disheartening. It was easy to tell if meds had an effect or not on my daughter. The Haloperidol created an almost instant lessening of symptoms. Other drugs produced observable changes too, but she always came off of them. When it wasn’t super obvious right away that some manifestations were “toning down”, as time went on, it became more and more obvious that symptoms were lessening. I.E. no more night screaming, no more arrests, actually talking to me, eating food, etc.

There were many signs of the illness, a lot that I missed at first, but they got significantly worse over time. And so, there were also many signs of improvement on medication, and many got significantly better over time. It has been 3 years since she started on the Haldol Dec Shot. The first month she was still in psychosis. It took months to tone down the screaming, paranoia, and mistrust.

I trusted the doctors that treated my daughter to know about medications and doses. I kept a log for the doctors so that they (and I) would know what changes occurred on each medication from my views.

@Maggotbrane thank you for your reply! I agree that continuing medication is a good strategy to slow degeneration, and bring about future improvements.

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My son has lived with us since his diagnosis 26 yrs ago, in the early years its a learning curb for all involved. I would suggest you get involved with family support groups and attend any educational sessions on sz they provide. Always remember your daughter is still the person you know and her behaviour or reactions are symptoms not who she is. In my case my son has said if he lived alone, he would be lonely. Believe it or not my son had never been sectioned in 26 yrs, up until May this year after a professional messed with his medication. Although he’s had what I call blips, it never lasted. It’s recognised that those with family support has the best outcomes

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I’m glad to hear your daughter is doing well in her group home placement. I feel the same as you about trying to help my son know he can be more independent. He’s perfectly happy living at home with us, but I need to know he can acquire AND apply the life skills needed to live alone for when I am no longer on this earth. I have no idea how to find a group home or a supervised living situation here in Georgia. I haven’t had any sources recommended by NAMI, our psychiatrist, counselors, or hospital. I would welcome any information from anyone regarding how to find group homes or any other supervised living. Thank you!

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: recovery is NOT the absence of symptoms, but rather the development of coping skills to manage symptoms to make them less burdensome so you can better deal with challenges of life— including and especially your illness.
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Thank you for the reminder, well said

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takingachance, I feel the same about my daughter and worry so much about her being on her own, once I am gone. All my family has already passed away most in their 50s and I just hit 50, I know I should be taking better care of my self but I think my depression is a lot worse than I want to admit. I was able to get my daughter in a home through the hospital and a group called the Abbey center but I’m in Iowa. I would think the psychiatrist and the counselor or hospital should have a list of group homes in your area. A transitional home that would eventually put him in a group home with an apartment of his own. I have also heard on this site of area’s that may evaluate your son to see what kind of job he could handle. Then take it slow. I hope your area has something to help you. Good luck!