Family and Caregiver Schizophrenia Discussion Forum

New at this and more than a little scared

Hi everyone,

This is my first time on a message board so looking forward to this experience (as I type this in tears :slight_smile:

My husband - we’ve been together since we were 16 (I’ll leave my current age a mystery) - we’ve been together for a life time.

He was, even back in high school, a bit paranoid but nothing really came of it - he wasn’t upset or let it interfere with life. But the last four or so years have been really hard. The paranoia is getting as bad as it could - he thinks the Police are out to get us (stealing our mail, watching him etc), He thinks my friends are all using me, he thinks my company has nefarious intentions etc.

He cannot hold a job and cannot keep deep relationships with friends (mostly b/c he doesn’t trust them). He was hospitalized last October (involuntary hold). We went to the hospital together (although begrudgingly on his end) - they ended up keeping him and putting him in a facility. After he got out he had major issues with being locked up - he was sexually abused as a kid and this brought all the helplessness and lack of control. To be fair I think so much of this is rooted in trauma so the trauma from the abuse was already there - not being able to leave the facility just exacerbated it.

He was put on Zoloft and Olanzapine (sp) - I don’t think the Zoloft did much but the Olanzapine helped to calm him down and focus - still couldn’t get a job but could do things around the house and be fine in public - he still had his paranoia of course but was managing and not freaking out all the time.

The mental health care he was receiving was horrible. The woman who was supposed to diagnose and have talk therapy kept forgetting who he was and got him confused with other people. She never actually did talk therapy with him and it was NOT trauma informed whatever she was doing. Thus we had no diagnoses.

The woman who was doing his meds was a little better but still didn’t talk to him about anything. He said the Orlanzapine was giving his HORRIBLE nightmares (it was) and he gained 60 pounds in about a month. I made him an appointment with a Psychiatric Nurse Practitioner to get different, more trauma informed care. When my husband mentioned the side effects and that we were gonna see someone else she told him to stop taking the Orlazapine and that it was “fine” - I freaked out a little but didn’t protest (lesson. learned.)

After about two weeks of being off the med and still a month out from our new appointment (that is happening next week) as you can imagine he relapsed and HARD. Started saying horrible things about my dad that we’re/aren’t true (my dad passed a long time ago), started saying horrible things about everything and everyone and just really freaking out, not sleeping, etc.

I had to run out of the house his paranoia and yelling got so scary (I have never personally felt in physical danger, he’s a pussy cat). I ran to the police station by us and without going into all those horrible details they handcuffed him and put him in an ambulance.

They put him on another involuntary hold and now we wait.

I don’t really know what I hope to get from this - support and understanding I suppose. And, does anyone have any success stories to share? I am feeling so hopeless at this moment and that is not me. My parents both died when I was very young, I was born stoic and have broad shoulders to carry this all on. But this time…this time I see cracks in myself.

My husband also is so very mad at me for calling the police - he said “this is victimizing me all over again” “I am so, so angry at you” He said he “doesn’t know if he can trust me again”. That is the worst part - he truly is my best friend and has never talked to me this way.

I just need to know there is hope and hear stories. Does anyone know if the paranoia ever goes away or do success stories just mean they are still paranoid but calm?

I am just so at a loss.

Hi MarciaSue,

I thought I would respond since no one else has.

I’m afraid I don’t have much positive to say, though, because my husband is in a very poor condition at the moment. (No, that is an understatement. He is homeless, not well physically, is not receiving any kind of help and is probably on bad street drugs and I am concerned about his well-being.)

I have never been through a time with my husband being medicated. When we met, he was a year out of the State Hospital and just getting off medication, which took about a year to clear from his system and he hasn’t been on psych meds since then (nine years).

From what I have read from others’ experiences, he may be angry with you now but will forgive you in time. Remind him that you love him and that you are his best friend. It is obvious from you posting this that you do care and that you do love him.

With my husband, the paranoia comes and goes, or at least he expresses it less when he is feeling better and expresses it much more when he is out of balance. Only he could say if the paranoia has gone away when he feels better, but I am guessing it never does.

Not knowing what state (or country) you’re in, I don’t know what to recommend for care or care providers, except to keep trying new ones for him if you have to, to find ones who truly care about your husband’s well-being and yours. If you don’t have a good therapist for yourself already, give one a try (someone who specializes in schizophrenia so they will understand what you’re going through) or see if there is a NAMI chapter near you or try AlAnon meetings or reach out to church/social networks you have.

I wish you and your husband the best. Please keep us updated and let us know if you find solutions where you are living.

This a very supportive bunch. I only come on once in a while, but I have NEVER read anything that wasn’t kind and supportive. Even when people don’t have specific advice, it’s nice to know you’re not alone, and you’ll find listening, supportive ears who won’t judge you, or try to make you feel like you’re “just overreacting.” (I know I’ve had enough people who have no idea what this is like try to “help me have a little perspective” and I could just scream!)
Many if us here have had “I don’t know if I can survive this” times. I don’t have advice on “how” I do it. I just get through the day, and then do it again. To be honest, I also finally recently started on a mild dose of anti-depressants to keep the anxiety attacks away.

Hi MarciaSue…
On Trust-
It’s a tough one. I personally have strong feelings against any kind of involuntary institutionalization, though given some of the situations that have been shared here, I fully understand why family/caregivers have opted for this, and the benefits (getting loved ones on medication. It appears sometimes this even brings Insight to and for our loved ones).
On the other hand, it’s fully reasonable that our loved ones would feel we violate any trust we had with them, and I think you’re correct, confinement/incarceration can and does seem to trigger those with illness, and causes them to go into full distress when it’s involuntary.
It’s a tough one… I know for me I’ve always tried to establish and stress with my loved one that I AM the place he can feel safe, that he can trust that I’m not and never have been in the business of harming him or us. Sometimes, in moments of clarity, he does seem to see this to be true. I personally believe that my dedication to this particular aspect of our relationship and lives has in fact been a big part of him being able to accomplish some of the things he’s managed to as far as life goals and focus. Probably simply due to the fact that it’s a consistency. I’m here. I’m always here. He knows he has a home. He knows he’s very, very loved. When he’s able to see it…
It’s a lot of energy and often is emotionally and mentally draining. For me to the point of finding myself a good therapist and learning how to manage my own anxieties through exercise, writing, hobbies like gardening, going out and doing things I enjoy (walk through a showing at the local artist guild, go hear live music, sometimes sit someplace alone and quietly enjoy a beautiful natural spot), and I think most importantly maintaining and nurturing my relationships outside of ours. Make the time to spend with good friends and family. For myself. My own mental health.
I’m sorry I don’t have more to offer. I think trust, in any relationship, is a keystone. And regardless of weather that relationship involves two healthy people or ill ones, it’s a delicate thing and takes time and work to build and when fractured requires extra energy and focus to rebuild.
It’s a tough one. Can be painful too. Somehow can feel like such a great loss…
Stay strong and remember to be good to ourselves first. So we we can be good for our loved ones.

Thank you so much for your message - I am sorry for the situation you are in - I don’t have the right words either - I can only hope for some ease and peace to come your way soon. Peace and calm for your husband too.

My husband is now out of the facility and has meds to get him through his appointment next week where we start talk therapy and will look at med adjustments. He is still really paranoid but is calmer for the most part. The meds did work on him before - never took the paranoia away but he was able to mostly function okay - but he had horrible side effects and is now saying he’s more open to taking the meds even though he doesn’t want to and thinks its all of us that don’t see what is really happening to him.

He said he knows it’s not my fault that I called the police - long story there but he’s still trusting of me and back to being loving.

Thank you again for responding - I really am sending positive vibes your and your husbands way.

Sometimes all we need is someone to be kind to us during all of this. Glad to know this is a safe space, thank you.

Thank you for your insight. I am right there with you - I am not sure how I feel about the involuntary hold but he was getting so scary and talking about suicide and he was just running around the house screaming.

He’s now home and saying he doesn’t think it was “fault” - he’s just trying to get over being locked in there without being able to leave but he does know that he can always trust me. We start with his new doctor next week and I am hopeful - he doesn’t like or want to be on the medicine but has agreed.

Sometimes he says he accepts the diagnose of sz other times he says he’s fine and its all of us who just don’t see how we’re all being “messed” with and being “used” etc.

It’s a very long road and I know it will take time that will be long and painful but he’s the love of my life and my best friend and when he’s clear and calm it’s so good. I just hope he can get to the point, with treatment, where he doesn’t think everyone is out to destroy and harm him - some of my closest friends he said I should leave b/c they’re no good - when in reality they are loving people.

I do try to take care of myself as best I can. I have book club, and a ladies travel club, and other things - I mostly just feel guilt when I leave him to do these things b/c he’s home alone and so very isolated but, as you said, I have to do what I need to do to take care of myself so I can then care for him.

I am so sorry this is happening to your husband and you. I understand totally the helplessness and hopelessness that can come crashing in.

It was a desperate 2.5 years and 4 hospitalizations until my 35 year old daughter was stabilized on the right med (a monthly shot of haldol) and began to have a sort of normal life again. It IS quite a success for us.

It is fine to come here to vent. I was on here almost daily for over a year. I learned a lot and that helped in the end to get my daughter stable. I had to take action and it worked.

I’m glad your husband is forgiving of your calling the police. I hope for continued improvement for you.

Thank you so very much - it just feels like I am so alone when in reality I know many people are going through this.

I am glad your daughter is doing better and the medicine is working. Right now he’s on Olanzapine and it has really bad side effects so I hope we can try a new medicine and that he gives talk therapy a try - sometimes he’s open to it other times not so much. So we’ll just have to see!

It is quite normal to feel alone. It’s only a small percentage in society that deals with severe mental illness. That means that approximately 99 out of 100 people you try to explain your situation to have absolutely no clue what you are talking about (and what you are living with). Trying to explain psychosis to someone who has never experienced it in someone they love is like trying to explain a hurricane to a squirrel who just thinks a hurricane is a windy day. I could never have imagined how impossible it is to live a normal life with someone with active psychosis before my daughter’s 24/7 psychotic episode. I thank God daily that my daughter is on a medicine that works and that the side effects are minimal for her. I truly believe it is our miracle and that we were blessed. I can barely believe that I was living with total unprediction in my home with regular police visits for over 2 years now that it is over and “past tense”.

There IS hope that the psychosis will break for your son. I hope the new meds work better for him (and for your own relief).

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Thank you so much! I am so glad to hear your daughter is better with the right medicine - I am hopeful too :slight_smile:

Just letting you know Clozapine saved my grandsons life. He is working and enjoying his life now. I had to fight to get it but it is the only one that helped him. He was trestment resistant. Now he is back

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I am so, so happy to hear that this medicine is working for him and that he is back to work and enjoying life :slight_smile: I will check that medication out.

Thank you!