Family and Caregiver Schizophrenia Discussion Forum

Daughter just told us

My daughter just told me she has been hearing voices. Has been paranoid about people watching her.
I’ve done my research and everything is adding up unfortunately to schizophrenia.
I feel devastated.

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Welcome to the forum. I understand that feeling of devastation you first feel with that kind of news. It is a crushing thing to learn.

The amazing news is that your daughter told you about her symptoms and that is kind of a rare occurrence and points to her recognizing her own illness or at least that something is wrong.

Trust me that is a good thing. It means she can be an active part of her own treatment and that she can get her symptoms under control with professional help and the right medications.

Prompt treatment is important as well as consistency. In my experience over the past decade with my own son and his schizophrenia I have learned that in addition to professional help it is very beneficial to encourage your daughter to look at all aspects of her life, her physical health, her stress levels, use of caffeine or any recreational drugs or alcohol if that applies and her daily routine.

Creating a calm, low stress, predictable space for healing is so essential in the whole process, at least from my experience it is.

This forum is an accumulative wealth of experience and information. I hope it helps.

My son was extremely ill in the beginning and was unaware of his own illness at first, and he had a drug problem on top of that. Today he is stable, voice free and drug free but in all honesty will always have to remain in a low stress and low expectation environment to stay well. That is not the outcome for everyone. Everyone’s case is very different and unique. He lives with me and is a very helpful and enjoyable room mate to live with. By his own admission he is very happy and that makes me very happy.

I wish you the best.

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Thank you for your reply and encouragement!
That is wonderful news about your son!

My husband and I have been in talks with her about getting help soon but I am so nervous about mental hospitals. They don’t seem to have a good reputation.

We ordered her vitamins that we heard help and we are encouraging her to go to the gym.
I guess the hardest part right now is knowing we can’t force her to do anything she has to do it and I hope it is soon before it gets worse.

Thanks again!

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Hospitals can get a bad rep at times depending on where they are located at and how much funding they are getting. Often hospitals may not even be needed if the patient can go to their psychiatrist as required and take the medicines as prescribed and report back accurately to their doctor any side effects or other issues that might arise. It often takes several tries at medications to find the one (or more) that works the best. Vitamins and exercise may be helpful for general health and wellness but they don’t cure schizophrenia or stop the voices when that is a symptom…

In my own situation had I not intervened on behalf of my son he would have never recovered.

I ended up with his guardianship enabling me to enforce the help that he needed. He was not happy with that then and fought me every inch because he was ill and the voices were extremely negative and counter productive and encouraged him to kill himself daily.

Today he is grateful I forced him into treatment. One thing about mental illness is it often prevents the patient from making decisions in their best interest. Maybe it will be different with your daughter and I hope it is. There are varying degrees of the illness and many facets to it. It is complicated to say the least. Again, everyone is different and has to follow their own path to wellness.

I got an enormous amount of helpful peer support and education from an organization called NAMI (National Advocacy for Mental Illness) Their Family to Family class was hugely helpful and educational. I highly recommend it. NAMI Family-to-Family | NAMI: National Alliance on Mental Illness.

Please let us know how things progress and feel free to read some stories here or ask questions if needed and take away whatever helps you along your journey. :heart:

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Again, thank you for the information. I will look into the link you posted.

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Choose hospitals and psychiatrists carefully. I think it’s very important to have a successful first encounter with mental health professionals, as it only takes a single bad experience to form distrust with treatment. I had an exceptionally poor first encounter with a psychiatrist who was laughably bad at listening to my concerns and putting me at ease. As a result I went unmedicated for a year and was eventually hospitalized before I found a better fit and became medication compliant.

Try also to look beyond stigma and unrealistic or overly negative portrayals in media. People with schizophrenia can and do recover or improve with treatment and lead meaningful lives. As with everyone, the level of their achievement varies. Some go on to finish school or work or live independently, yet because of stigma they often do so quietly and privately, lest attitudes toward their illness hold them back socially or vocationally. High achievers have few role models, with the notable exception of Elyn Saks.

Expectations have a way of becoming reality. I don’t recall any of my psychologists or psychiatrists giving me a specific prognosis or set of limitations. As such I viewed my illness as a problem to be solved or worked around, not a devastating life set-back. Your daughter will be changed by the illness, no doubt, but try not to let your fears and disappointment about her developing the illness frame her attitudes toward treatment and recovery. Maintain a positive outlook and learn as much as you can about the illness. Good luck.

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You are very very lucky she told you and she has insight . That’s half the battle

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First-episode schizophrenia seems to be looked at differently compared to after it has gone on for a while. Where I live, they even have government-sponsored treatment programs for FES, but it’s only for people whose first psychotic episode is within the last 2 years.

See: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3569147/. The side-bar has other articles about FES.

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Welcome! You are in a safe non-judgmental space- many of us have been where you are. I think you are lucky that she shared her altered experience with you. My suggestion is that you research and take her to the “best” psychiatrist who specializes in schizophrenia to start figuring out which meds will quiet the voices to allow therapy to take hold.
I also want to acknowledge your sadness- I understand and feel it too. It shifts but doesn’t fully dissipate. Please remember to be kind to yourself!

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Thank you! Good news everyone, after spending a full morning calling around someone squeezed her in for next week. Everyone either wasn’t taking new patients or didn’t have room for 2-6 months!
On the downside she had to leave work today for the first time. The constant noises from people’s tools and the fan irritated her mind too much. It was too loud.

As far as I’m doing, I called a therapist because it’s affecting my sleep and eating already. This illness sucks!!

Thanks for listening.

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I’m so sorry, I remember that sickening drop in my stomach when I found out my son had been hearing voices. However, I do think it’s encouraging that your daughter knows they aren’t real. My son knew, too, and I think it’s a good sign. There are actually way more people out there who hear voices regularly, but learn to deal with them, than you would ever suspect.

I wanted to echo what others have said about finding a FEP (First Episode of Psychosis) program. I think there’s at least one in every state (I may be wrong about that). They may want to watch and wait for a bit before going hard on the meds right from the start. He was given an Rx for Risperdal by a psychiatrist in his college town, but the local FEP psych took him off of it (this was back in 2018). We’ve had our ups and downs since then, but he is so much better off now. He seems like his old self (which is admittedly a little odd - we think he has Aspergers). I think he may still hear voices sometimes, but he’s learned to ignore them and sort of override them, and this spring he graduated from college - 2 years later than planned, but infinitely more appreciated!

Finally, good for you getting your own therapist. I went for about a year and it was good for me to have a place to vent and also to get feedback from a professional as to how much I should reasonably expect from him, etc.

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Hello, I agree that her awareness is key. My son was mumbling and talking to his voices in front of us and has never admitted, even now that he’s well, to hearing them. I think his voices gave a running commentary whenever we were talking to him-we can only guess. Treatment within the first two years is critical. Many cities have early psychosis clinics since early treatment is recognized now as imperative. My son is being treated through a university research program that took him in and only take people within 2 years of onset. They track him closely, administer his shot and counsel him each a week. Yes, this is devastating news for anyone. But believe with treatment she could have a wonderful life. My son has his own apartment, a corporate job at a large company and he is a performing musician. If you told me 4 years ago that we would be where we are now, I would have said no way. He does have break through symptoms on occasion and I panic—but so far he’s been incredibly stable. In the beginning The unknown is almost unbearable-but you can do it.

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That is such great news that it is possible for some to stay off meds with this illness.

I worked in the mental health field and quit the place I worked at when I saw they over medicated (no joke up to 15 pills a day). I am not against meds if that is the last resort but I believe in a healthy lifestyle and other therapies to help manage symptoms. So…this is wonderful news.

I have to say so far I am appaled by the lack of help for this illness and terrible reviews of inpatient care in my state. Very sad.

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You are really fortunate she confides in you. Getting her on the right meds can help her live a normal life.

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Brava, Catherine. Perfect thing to say.

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I’m so sorry. This is a club no one wants to be a member of. I agree with everything Catherine said. The process of adjusting to the realization that your child has any chronic illness is much like the seven stages of grief. Eventually you come to a degree of acceptance,

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