Family and Caregiver Schizophrenia Discussion Forum

Being diagnosed is hard, being a relative is harder

My younger brother visited us this last week to get away from the place he was staying. He lives with his stepdad and was told he needed to go to a mental hospital, and basically ran away to stay at our place. He was up most of the time talking to himself. He keeps saying he’s “channeling” people from the “ether” and gets mad if we interrupt him even if it’s on accident.

He’s been sick almost a year now and refuses to get help. Now he’s telling family that he is taking medicine which is an obvious lie, we know where he goes and he won’t go to a doctor.

Anyway I didn’t really feel safe at night because he kept saying that I was talking to him telepathically and saying I wanted to kill him. He’s a really big guy and is intimidating when he gets mad.

I think I realize now what my mom had to deal with when I was delusional in 2015. It’s exhausting. You never know what they are thinking and never know what you could do that will set them off.

My delusions went away years ago, because of medication and therapy. I was in treatment from day one because I was dealing with a bipolar diagnosis since long before I got sz symptoms.

So two of my mom’s three kids got it, if the third one gets it, it will be the ultimate tragedy. The crazy thing is nobody on my mom’s side had it, and my brother and I only share one common parent, our mom.

I don’t know how caretakers deal with actively psychotic loved ones. I feel like someone should be in a hospital if they are psychotic, we just don’t have the resources for round the clock care and without medicine he’s just getting worse.

I got sick at age 30 (7 years ago), he got sick at age 28 (just this year), so the time of onset is pretty similar. I really hope he can recover at least as well as I have. Part of me is worried he might get violent at some point, because of how angry he gets with the people who care for him the most.

Also I should note he already assaulted my stepdad, and a charge was put on him, but when we called them later on and had him picked up, they just dropped him back off an hour later with papers for a court date in April. It’s gonna be a really long four months.

We had one incident 10 or so years ago before either of us got sick, where we got into an argument and he punched me, broke my nose, and strangled me for half a minute… so I worry he could do it again especially now that he’s sick. I’m not going to call anybody personally because I rely on my mother for housing, so I am gonna let her make all the calls, but every minute he’s over I’m scared. He’s currently bouncing between his mom’s, his dad’s, and his grandparents’ houses. He can’t seem to stay in one place for any length of time. I wish my mom would say he can’t stay here, so things would be easier for me, but maybe that’s selfish. I mean he does have two other places to live.

First, congratulations on your recovery. One can only hope your brother takes inspiration from you and learn how to manage his illness.

It is so hard having a loved one with sz or other serious m.i., but I do think it’s harder to be the one who is ill.

I don’t have much advice, just empathy. Hospitalization of course is sometimes necessary. Reach out to whatever county or state mental health departments or nonprofit.groups to see if they can offer any help in getting him to a hospital.

And please be careful. If he is violent, call the police.

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I guess it could vary from person to person, but when I was sick I had the feeling of being someone very special. I had this dream-like interpretation of the world that always placed me at the center. Since recovering that is gone, and being around someone who is ill doesn’t provide that same effect.

I’m trying to be more empathetic and we’re trying to get him help, we are working with crisis management team to get him evaluated and hopefully get him diagnosed properly.

It’s tough on both ends, but when it was me who was sick, I had the power to put out those fires and save my whole family a lot of grief by taking my meds and going to my doctor appointments. Now that it’s my brother, I have zero power and zero control. It’s a real horrible feeling. And I feel bad for him because I’ve been there, it’s terrible to go through. I guess I may have forgotten exactly how bad it was to some extent, that’s how my mind works, it just kind of blocks out the really bad stuff so I can carry on with my life.

Thanks for the reply, I honestly needed to vent about it a little.

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Venting is good!

I’m glad you are getting a crises team involved.

Obviously, not having a mental illness I don’t know what it feels like. I just see the misery my ex (and still good friend) is going through. I want so much for him to have a good life. To go back to work. To find a place to live. To be happy.

Your comment about feeling like you were the center of the universe when you were I’ll is interesting. I can see that in my ex’s illness. Unfortunately he thinks everyone is against him and conspiring to hurt him. He’s in the hospital now and not happy.

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I’m sorry to hear that, best wishes to both you guys. This is a really tough illness.

Dear friend,
I’m sorry for these deep, difficult struggles. You understand how hard it is for your brother having gone through this situation as well. As you have recovered you know how important it is for your brother to get the help he needs. Keep tough love.
I had to help our daughter get hospitalized twice and she is again recovering and functioning well. They say the sooner you get help for someone with an SMI that better chances of recovery.
Keep connected with those who can help and if you haven’t connected with your NAMI resource person I’d encourage you to do this.
Blessings, Julie

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I have a question I’d like to ask, but I don’t want to start a new thread so I’ll just ask it here.

How do you folks feel about ultimatums? Like, if we were to say “you’re welcome to live with us if and only if you are on antipsychotic medication,” would that help or hurt the situation?

@agent101g I understand the sentiment, but probably not a good idea. Ultimatums too easily backfire. Persuasion, based on evidence that a better life is possible with meds, is a better idea.

I think the best thing would be to help him see that meds can help him feel better. Who wants to hear voices and be scared all the time?

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In our situation there was a time during which no amount of persuasion was successful but an ultimatum was. Although the ultimatum made a lot of rational sense to me (no drugs and keep on your meds in order to stay at home), it took a long while before I made it because I needed to be willing to follow through if house rules were broken. I served two eviction notices. My son went to his dad’s after the first eviction and was homeless for several months after the second eviction. I was horribly worried for him. That was about four years ago. Since then he’s lived at home and has been following house rules.

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If he gets violent, call the cops and say it was violent and has mental issues. They’ll get him into the psych ward at a hospital.

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My brother-in-law’s doctor advised us against giving even a soft ultimatum, such as saying that we would continue to support him financially, but that he would have to meet us halfway, i.e., take his meds on strict schedule, participate in CBT, etc. The reasoning was that he was too fragile emotionally for such demands. In the end, we decided not to risk it. We did insist that, however, as he had not obtained employment even though jobs were plentiful, he apply for the Social Security Disability Income benefits that he had earned during his prior working life.

What is appropriate would obviously vary from patient to patient, of course.

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While it’s certainly a different experience for me, I wouldn’t say it’s harder. Being a younger sibling whose brother became ill prior to me had its advantages. My parents were already familiar with mental health care and psychiatrists and were able to tap into resources at NAMI. They were completely blindsided by my brother initially, and it led to some counter-productive and expensive attempts to “fix” his situation. I also had some examples of how therapies worked and didn’t work for my brother, and resolved I would have a better recovery path than he did. And at times I’m better able to coach my family about what might be going on with him and see through his bullshit.

All this said, I empathize with much that you’re saying. A diagnosed caregiver has more intimate knowledge of the sort of thoughts, feelings and experiences other sufferers have, yet still often fail to reach them in the face of anasognosia. And that failure can seem personal in ways undiagnosed caregivers don’t experience. Yet I feel it may be a bit easier for me to detach than my fellow undiagnosed caregivers and chalk it up to the disease rather than take individual symptoms like delusional rants personally. And dare I say I feel a little relative schadenfreude in that I’m doing better than he is, as a mirror to how far I’ve come and motivation to keeping myself well.

While I haven’t been through Al-Alon training, I’ve read the books and the one thing that struck me is step one—admitting that you are powerless over the drinker. Since my brother has a dual diagnosis I tend to think in these terms. They differentiate between being powerless and helpless. It’s easier for me to be objective and detach and realize I’m not to blame and can’t “fix” him or the situation without his buy-in with both his alcoholism and bipolar disorder than for undiagnosed siblings and parents. It seems like a given considering my experience.

To me it’s like the difference between learning to ride a bike and teaching someone to ride one. The rider is the one doing most of the work and risking life and limb if they fall, and the ignominy of failure if they can’t manage it. Yet, they gain mobility and freedom if they succeed. The teacher can merely watch and offer support and pick up the pieces if the rider falls. Any pain is felt through empathy and lack of control filtered through a feeling of responsibility for the outcome up to having to drive the rider everywhere if she can’t manage to learn the skill. Once you’ve learned how to ride a bike, teaching it may seem harder just because it’s become automatic to you and you’ve forgotten how hard it was to learn. All said, I’d rather teach than learn how to ride all over again.

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