Sometimes it is just so difficult

Family
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I’m new here. My husband of 30+ years is hospitalized at the moment, but getting to this point has been really difficult. It’s schizophrenia. Untreated. No meds, no psychs, virtually nothing to date, except for some very difficult times.

He was successful and respected in his field and retired a few short years ago. That’s when his condition became apparent and perhaps escalated. The government is coming to get him or kill him, he talks to 7 different voices and some were his good friends, he thinks someone implanted a chip in his body to read his thoughts, and he is so paranoid that I cannot begin to describe all of the stories.

It’s difficult. I’m supportive, patient and understanding 99% of the time, but sometimes I just break and say, “Why can’t you just acknowledge that the voices are not real?! I want our lives back!”

How do you do it? How do you work through the difficult times? I’m 59, ready to retire, and planned to travel and enjoy the fruits of a lifetime of labor. Instead, I’m kept up until the early morning hours listening to the love of my life argue with voices that he swears are real. It consumes him. I believe I’m mentally stable, but sometimes I feel like I’m going to crack.

Can anyone give me some guidance, some tips, for working through these difficult times? Thank you in advance.

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Im so sorry to hear , i know how you feel i really really do .You should try going to Nami or even call them as they are very helpful . Lets hope the meds that they give him at the hospital will diminish his voices and he may want to continue them , part of his condition is not having any insight that he’s sick , its called ‘‘Anosognosia’’ My son has no insight but is med compliant due to a court order . Hang in there , one day at a time .

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Welcome to the site @TRO . Yes, I would say that almost all the time is very difficult when dealing with unmedicated schizophrenia. The delusions your husband is suffering are very, very real to him, and he cannot help but accept them as real. So, you won’t be able to talk him out of them.

My daughter was actively psychotic for some years, refusing to stay on medication despite hospitalizations. I am a firm believer now that nothing besides a heavy anti-psychotic could have helped our situation during those horrible days and nights of active paranoia.

I suggest that you talk to the team at the hospital and express your desire that he be medicated while he is inpatient. With a goal to getting him on a long acting injection. Often, after release, the person suffering from sz will go off the meds or not be willing to take them daily as prescribed and the psychosis comes back. Only forced long acting injections helped my daughter and broke her psychosis. It has been a calm 10 months now.

Come here often, I did daily during crisis and still do. Reading is the best way to learn possible ways to help your husband.

Dr. Amador’s “I’m not Sick, I Don’t Need Help” is a great book to read. It includes a method for trying to talk to people suffering from delusions.

I wish you the best possible outcome for you and your husband. Be kind to yourself. This is a very hard road.

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Ah, I hear you. Similar situation in terms of married for many years to high achieving professional who, in retrospect, has probably had some low level symptoms since his 'teens or twenties, but neither of us had any idea until a few years ago, when he began suffering from persecutory delusions.

His family and I managed to get him into treatment and he was doing very well on a very low dose of antipsychotic medication until he had to be tapered off due to side effects and relapsed, with the relapse due at least in part to impending retirement in my opinion.

He has been paranoid and withdrawn for six months now, including a lot of paranoia about me, which means that he doesn’t share a lot with me about the specifics of his experience. And even when he was doing better and working, he did not believe he was sick, so he also has anosognosia (neurological lack of awareness).

I totally agree with oldladyblue’s recommendation of Javier Amador’s book, “I’m not sick and I don’t need help”. I’d also suggest you watch the online videos he has available on his website.

This book and videos helped me a LOT in terms of rebuilding/repairing our relationship. It also got us to the point where he agreed to resume medications again if his psychiatrist wanted him to (so far, the pdoc has been holding off, as he considers my husband’s case ‘mild’ - which I guess it is, in terms of the range of symptoms, but even a ‘mild’ case of schizophrenia keeps him trapped in the house due to fears of surveillance).

I have also gotten wonderful support and advice from others here in the forum.

I really feel for you, and I can totally relate to feeling that you might crack. I have felt the same.

Take the time while your spouse is in the hospital to rest, recuperate and to plan your strategy for when he is discharged - Amador’s book has some good information at the end about how to cope with a loved one after an involuntary hospitalization.

My husband has not been hospitalized but he has taken several trips to see his family, whom he does still trust (bittersweet for me, as I’m glad he has a place to feel safe, but I so wish he felt safer with me).

I have used these times as opportunities to recupe and also to try to get myself in a better place for interacting with him when he returned - and I do think our relationship, which has been quite stressed by his symptoms, is steadily improving again.

Better times are possible, and if your husband functioned well (in love and work) before his psychosis, then the chances of him being able to be a good husband to you again are good. And people with onset of symptoms later in life tend to respond well to even low doses of antipsychotics.

Hang in there!

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itsastruggle, thank you so very much for your insight and guidance. I have now ordered Amador’s book and look forward to reading what I hope will help me to help my husband. It’s such a sad situation and breaks my heard to know that right now he is leading a life of isolation. Isolation in his own mind.

Sometimes I wonder how I missed it. I’ve known him since I was 14 years old. Sure, he was somewhat “cautious” over the years, but I attributed that to his career in law enforcement. Yet I should have noticed it before it spiraled out of control and became obvious to all of those close to him. Maybe I really did know in the last few years. Maybe I just did not know how to handle it. When he finally told me of the voices, it was pretty obvious there was a problem, especially since I could not hear them and he swore they were real. As it escalated, he became fixated with figuring out where they were coming from, and that’s when he latched onto the idea of chips implanted in his body. When you think about it, of course he desperately wanted answers. If a person is convinced the voices are real, then there are only a limited number of explanations for the cause, I suppose.

It’s just so unfair.

The doctors during his first hospitalization tried him on Risperdal. It appeared to be working until after his release. He ended up back in a different, smaller hospital with symptoms of a stroke. It was cold turkey off the Risperdal without any guidance or direction from a psychiatrist. For 6 months, he took nothing and the symptoms came back tenfold. With this new hospitalization, they are trying Seroquel and Haldol. Two nights ago he was drooling and falling asleep as we talked, and last night he was talking nonstop to the voices. I know it takes time. He’s in a safe place. It is 2 1/2 hours each way from our home, but it’s the best and that’s where he needs to be right now.

Sometimes it is just so difficult. But my husband is worth it. So I wait. And pray. And work. And drive.

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Thank you, Linda. I live in a rather small community and there are no active NAMI groups. I did not realize I could call, so I really appreciate that suggestion. I will give it a try.

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oldladyblue, I appreciate your insight. Because I am so new to all of this, I did not realize that there were long acting injections. Considering that it sounds like many, including my husband, do not believe they are ill so they stop taking their meds, the injections might just be a Godsend. I will talk with the doctors about the possibility, especially following his release from the hospital.

My heart aches for those of you with children suffering with this terrible condition. Shame on me, but I was so ignorant about schizophrenia that I never gave it much thought and had an incorrect understanding based only on movies that were nothing like what I’ve seen with my husband. We have no family history of the condition. The doctors suspect that my husband’s resulted from a blow to the head when he was a young police officer, but of course nothing is for certain. I suppose the cause really does not matter. The condition is horrible, no matter what the cause. I sincerely hope that everyone suffering can find the help they need, and especially the children.

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Yes, it is very unfair, TRO, and the strength of such unhappy belief systems is tragic. My husband has always been a very popular guy who makes friends easily and who can just light up a room with his presence. But in his own head, he has no friends and everyone except his family (even me) is actively wishing him harm.

I wouldn’t beat yourself up about not noticing sooner. Because of my education and background, I figured things out very quickly, but ultimately, I don’t know that it made much difference:

I was able to avoid the major mistakes (such as trying to argue him out of his delusions) because I recognized relatively quickly that he was delusional. I also knew to try to focus on the underlying emotion and to try to go with that.

I imagine that all of this was helpful, but it still took a long time to get him into treatment the first time and it certainly did not prevent relapse, rebound psychosis or a deep lack of trust focused on me.

It is a very complicated illness, with the anosognosia commonly associated with it making everything so much harder. And even when I understood what was happening, I have to say, it felt (and still feels) very surreal. It is a very helpless feeling.

My guess is that without you at his side, your husband would be doing much worse than he is. You did a brilliant job in getting him help to accept help by focusing on something he actively wanted (to lessen the voices he was experiencing). And certainly his chances for the future are much better with you actively involved.

I’m so sorry the hospital is so far from your home. Drive safely.

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I have no where the years you have into this. That said, at the end of June my life changed quickly and sudden. I’ve felt like a prisoner in my own life. The last few weeks I’ve realized enough is enough. I cannot change what had happened and I cannot change what may happen but I can change how I react and feel about it. Although, I’ve had to change my schedule, really my life, I’m buying back little pleasures I feel like was taken from me when DD had and still has full blown psychosis. So every night, I reflect on the day and write 3 things I was grateful for that day. For me, it just kinda helps me focus on the positive and not the negative. I felt the negative had just taken over my life and I saw nothing else when I realized it was just how I reacted to it. This is a wonderful group of people from all walks of life who all share one dreadful thing in common. That one thing has produced friendships with people without a face and I am grateful for them…

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@TRO and @Happee my heart hurts for your current struggles. This illness is something no one can understand until it hits their family member. I was very very ignorant when my daughter first became ill. Only educating myself through this site, reddit’s sz thread and NAMI meetings helped me to not feel so stupid and helpless. Only people with experience with a schizophrenic loved one could provide good advice. One thing it took me a long time to learn was to take care of myself. Happee, I am glad you are being kind to yourself.

There are two battles I had to win somehow for my loved one: the “I’m not sick” battle, and the HIPPA battle which prevents family members from helping medically after a loved one leaves the hospital. @TRO, I suggest you talk to the staff of the hospital as MUCH as you can to work out helping your husband get on medication now, as once he is out of the hospital he may refuse to allow you to have any say in his treatment. I was offered the chance to get my daughter on a monthly injection during her 1st hospitalization. I didn’t take that opportunity hating to be the one to force her onto meds. That was a big error, as she stayed psychotic for 2 more years before the opportunity came up again. Those 2 years almost destroyed me.

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He IS worth it and you are doing great things! Read various posts on this site, Dr. Amador’s book, also the book “Surviving Schizophrenia: A Family Manual”, and try to find and attend a NAMI support group and their Family to Family class if and when offered in your area, and take care of yourself. All these things have helped me/us!

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You have all been so helpful, and I appreciate it more than I can say. My husband will be released from the hospital tomorrow. He has been more calm and in control over the last few days. It’s good to see his personality finally returning to us as the voices are not occupying his every thought, thank goodness. The doctors seem to have him on meds that are working, at least for the time being.

With the advice given by all of you and with reading on this site, I purchased and have read Dr. Amador’s book, have located a local NAMI group, and have already arranged for intense outpatient therapy on a 5 hours per day and 5 days per week basis for my husband. He will then transition into 3/3 once they feel he is ready. Although he still swears the voices are real, right now he is committed to the plan. I pray that willingness continues.

Time will tell.

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I am glad that the medicine is working for your husband and he is able to come home. Maybe I ask what medicine he is taking and any side effect?

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Way to much IMO… If it were me, I would not push it, this is forever, long term shit…

Stressing him will make it worse… relapse is certain…

The voices are real, very real, as real as you read this message… never deny or argue the reality of any of it…

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I kinda agree. I hope your husband is ok w this schedule. Mine never would’ve done it. At the day program they sent him to, he said they did a craft project tracing their hands on paper. Like how kindergarteners make turkeys w construction paper. He found it stupid and never went back.

I don’t want to discourage you. But if the 5 days a week thing doesn’t work out, then move quickly to the 3 days. Good luck! It’s great that he has benefited from his hospital stay.

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He had a hospitalization in April 2019. It was when we first realized there was a serious problem that was at a crisis level. After that nearly 3 week period of hospitalization, he was to go into a pretty intense counseling program but told us he “needed a break.” Time went by and he never went to any professional or program, plus he stopped taking his medication. That led to his recent hospitalization.

He has now agreed to do whatever the doctors and his family believe is best for him. We are so fortunate that he has this attitude, and I honestly think it is because he wants to do everything possible to avoid a return to that state of crisis. He is now on 700 mg of Seroquel at night together with Haldol twice daily. No side effects so far. The doctor has suggested two weeks in a 5 days per week/ 3 hours per day (rather than 5 hours/day) outpatient program, then a transition to a 3 days per week / 3 hours per day program for two or three weeks thereafter. He has agreed. It may turn out to be rather juvenile, but even if it is, I hope that it will be a safety net type of transition back to the real world. Thereafter, it will be just one appointment per month with his psychiatrist.

It’s a plan, and I realize it may not be perfect and may need some adjustment, but I’m optimistic, crossing my fingers, and praying bunches!

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Well, plans and intentions change, I suppose.

The outpatient program was to begin tomorrow. He’s refusing. Maybe he will start Tuesday. Only time will tell as right now he is claiming that our family is trying to run his life. His claim is that he needs no help other than to get the chips out of him that cause the voices plus the only reason he tentatively agreed to the counseling was to satisfy his family. His thoughts are scattered. The voices are more quiet, and we are grateful for that, but the condition is still very apparent.

Lord, give us patience.

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I am so sorry, TRO. How incredibly frustrating and also frightening that must be for you.

I think the best thing you can do right now is to start practicing LEAP with your husband.

The first step (and the most challenging one, or for me, anyway) is to do your best to let go of your agenda (which is to get your husband to continue to participate in treatment).

Then, really focus on L (listen) and E (empathize), by reflecting back the things your husband is telling you, using his own words and checking with him to make sure you are getting it right.

Then tell him how you would feel if you were experiencing what he has (eg if what I really needed was help getting a chip out of my head and my family kept telling me I needed to go to counseling, I’d be really irritated with them and I’d feel like they weren’t listening to me).

It seems like a positive sign that he tentatively agreed to participate in treatment, even though he is backing out now. Clearly, he does care about what his family thinks, but he really is not feeling heard himself.

It is possible that if you spend enough time listening and empathizing, he may soften enough to be willing to stick to his tentative agreement. But you have to accept that he may not, or not this time around.

If you haven’t had the chance to watch Amador’s videos, I’d recommend doing so. I understood the basics of LEAP from reading the book, but found watching the videos very helpful in terms of modeling how to use the approach.

Clearly, he loves you and cares about what you think, or why would he even tentatively agree to do something that from his perspective must seem like a total waste of time at best, given his chip concerns, which of course feel much more urgent to him?

You’ve been together for so long and your lives are very intertwined. It must feel terrible for him to feel so alienated from you. I do think it will bring comfort to him to feel that you are trying to understand what he is going through.

And having him get some comfort from you would bring you some as well, I think.

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We have to try what we know we can try. We have to be willing to learn all we can in order to do that. Each person with SMI is different. Some DO respond well to treatment programs. Others do well in a group setting where medication is required. Often those programs are expensive but even state-funded hospitals have treatment program. Or others are on court-ordered treatment, typically due to some violation of the law. Over time, medication can help a person become med-compliant and/or have more insight into his/her own illness. Using LEAP can help persons become med-compliant or accept treatment if they are not already. NAMI principles of support include that we “never give up hope” and that “we cannot solve all problems”.

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Sorry to hear that. Hopefully, he will be willing to try again in the future.

My ex signed himself up for an outpatient day program. I was shocked when he told me. The program is 5 days a week, 8-4. The lasttime I talked to him, he said it was going well. I have not heard from him since before Thanksgiving, so I’m no t sure that is still the case. Hope to share an update soon.

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