Family and Caregiver Schizophrenia Discussion Forum

My wife might have schizophrenia... Now what?

Recently my wife spontaneously developed auditory hallucinations and paranoia. Her doctors all think there’s an organic cause creating psychological symptoms, but no one is really sure what it is yet and so we don’t know how to treat it. It’s also possible she spontaneously developed schizophrenia at 40yo with no history or family history of mental illness, so that’s something I need to prepare for and what life will be like.

For the last month I worked from home to care for her and help her cope with the delusions and hallucinations, and it was fine. I’m a social worker by trade so I knew a lot of skills and tools, though it wouldn’t have been a good long term solution obviously. Then came the psychosis, and when I became worried she would accidentally hurt herself, I had to take her to the ER and she has recently been admitted to a medpsych unit and is working with neurology and psychiatry to determine the cause and treatment.

My question isn’t about what she will be like with the disease, I’ve seen that. What I can’t seem to find are personal experiences of people whose spouses developed the disease after being married for a long time, what was their relationship like? Assuming I can ensure she takes her medication, and she goes to her therapy, some of the side effects of these medications mention inability to show emotions, or inability to connect with people, or lack of intimacy.

Should I expect that? Is that common? Will my once loving, caring, beautiful soul of a wife be distant and emotionless and not wanting to be hugged and held and loved? I’m less worried about the disease it seems and more worried about how she will be when the disease is managed.

When she was suffering her hallucinations and delusions she always wanted to be held and comforted and have her hair stroked and it was genuinely really nice. It was sweet and I didn’t mind comforting and reassuring her and being there for her. She was never aggressive or destructive, and her persecutory delusions were never centered around me doing anything to her, but rather her having done something wrong and people being mad at her, so she always wanted to be reassured and comforted.

I guess I’m just worried when I read about these medications is that the side effects of the medications are worse than the disease sometimes. Obviously I want her to get treatment, I don’t want her to be scared and hurting and suffering from the hallucinations and paranoia, but I also don’t want her to loose her spark and beauty.

I’m a 52 year male. I have used various meds for my schizophrenia and so has my mother too. I am on a very large dose of antipsychotics and it have never felt stronger for my nearest family than I do now. In my family we are very connected to each.
I found hope. Where there were no hope at all.

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Thank you. I read about all the side effects and I’m worried, and I couldn’t find anything online that spoke to this issue and gave me people’s real life experiences.

Generally flat affect and reduced expressions of emotion are considered more symptoms rather than side-effects as they often develop in prodrome absent medication and tend to continue as symptoms become more acute. There can be some drowsiness and dulling of attentiveness due to medication, but my experience is these effects are transitory and can improve with adjusting dosages.

This said, individual symptoms and response to AP medication is highly variable and hard to predict. I recommend you read-up on so-called “negative symptoms” of SZ before you start attributing emotional changes to medication side-effects, as it sounds like you may be conflating the two. Negative symptoms tend to linger and are harder to treat than positive symptoms. I’ve found more success with psychotherapy and psychosocial treatments than with medication, but it can be a long haul.

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Speaking only from my experience, my son has become much more affectionate and appreciative since getting on his current medications.
It’s true that he can have a flat affect sometimes, but he is so much easier to live with now.

I hope your wife is able to find the root of her symptoms. If it is something on the schizophrenia spectrum, it can take quite a while to find a good combination of medications, but there are a lot of options.
She is lucky to have you!

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We’ve been married for most of our adult lives, she’s my whole world, I’d do anything for her. I just wanted to get an idea of what to expect so I would know how I need to adapt for her and what I can expect from her in a general sense. These are some really heavy medications and the list of side effects can be terrifying for someone with no experience with them.

The whole COVID situation making them not have visitors has made it hard but she seems to be improving and she had a really good day today, so hopefully they’re beginning to figure out her medications.

Hi ForBetter, I’m so sorry you’re going through this. I have a very similar experience. Have been with my wife for 13 years married 5 and in year 2 of marriage it all started. What specifically would you like to know? Happy of you PM me too.

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@DFL88 I think I PM’d you, but I just kinda want to know what it’s like, what changed, what evolved. Is there anything you wish you had known earlier?

We’ve been married almost 20 years, so half our lives, and until this started last month she’s never had a single hint of mental illness so it’s all new to me.

Hi ForBetter. Your choice in name is priceless. That’s what this is gor those of us with spouses with this disease. …for better or worse. My husband is paranoid schitzotypal. He was diagnosed almost 3 years ago about 6 months after we got married. I can answer some things but so many others I can’t. You are going to have so many questions and there are resources but they are hard to find sometimes. You can message me but search this forum. So many great people and lots of answers are here. It’s been a blessing to me. Take care.

@GEORGE you know, it’s funny, the name was from a random name generator. It gave me a huge list of name choices and I saw it and was like PERFECT and it wasn’t taken and I really like it. I know the disease is different for everyone, and I know a lot of it will really depend on her and how she is.

We’ve been together so long and I will always have her back and do what’s best for her, and that’s what I’m trying to do here, what kinds of things changed about the relationship and how is it different now than it was. Is there anything you wish you knew sooner that would have helped you?

I really just want to get an idea of what kinds of things I can do to be better for her to make things easier overall and hopefully make this new page in our lives as good as possible.

WOW how wonderful that you are committed and there for your wife. In recent years after many years of marriage my husband was diagnosed not only with ADHD and high functioning autism but dissociation as well. I’m glad to hear that she’s receiving medical assistance to make sure there is not a physical cause that would make or contribute to her Schizophrenia. Also trauma is known to express itself with similar symptoms.

You and her each need your own personal therapist to work through how to work together as you deal with this SMI. It isn’t easy but you need to care for yourself as well as your wife. Letting your spouse express her feelings and really listening where she is at is so important. She needs a lot of affirmation which sounds like you are giving her.

Also when she is stable it would be good to have a plan in place in case she regresses. Do you have POA mental health document for her? It is important as you deal with an adult person as HIPA laws are quite strict.

It’s important to educate yourself about the SMI and realize her potential. It is good that she feels responsible and able to do things for herself. There may be days when she can’t function well but just be there and let her know she is important to you. When she gets depressed she may not be able to function well.

My big thing for us in our relationship has been to realize and accept the fact that there is a diagnosis that needs special attention. Your wife is a person with Schizophrenia not a Schizophrenic person. On our part there is a lack of physical affection/relations. My spouse doesn’t always express his feelings well but not sure that is true of your wife. Actually I don’t always understand what I’m thinking or feeling at the moment. But learning to express my feelings and what I need is helpful in the relationship. We’ve read a book called How We Love by Milan & Kay Yerkovich which has been helpful for us to understand attachment styles for us and having a list of feelings and how to use them in a healthy way.

Just some thoughts. I wish you the best as you sound like a strong man who is committed to a loving wife with special struggles.

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@Julie1 see, that’s what is strange, I read that often people with schizophrenia have issues expressing emotions, but she’s been the exact opposite. She’s never been really affectionate or touchy, but and she just told me this tonight she felt like everything around her was crazy but I was her safe space so she never wanted to be away from me. She became really sweet and affectionate and wanted to be held and have her hair stroked and that was nice, I never would mind comforting her at all.

She’s doing really well right now, every day she sounds more and more like herself when we talk on the phone and it’s wonderful hearing her personality come back. I admit, sitting on the phone telling her about our dogs or my day and having her only able to whimper and cry was really tough.

I actually started counseling this week, I know that I need help coping with her being in the psych unit and being unable to see her and hearing her being so sad and miserable. And I know long term I’ll need tools to help her and work with her.

At the end of the day symptoms of the disease doesn’t bother me as much as the thought of losing her or failing her does. She’s been my best friend for half my life, I’ll always have her back and do everything I can for her.

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I wish I would have known more of his childhood. I think that would have helped me understand more. Right now I am not the best one to give advice. Each of our situations is so very different in some ways. This illness can be cruel. We have to remember and sometimes it’s hard but remember that it may feel overwhelming for us, it can be more so for them. My husband sometimes hates me. That’s not an exaggeration but a honest feeling he expresses through some of the things he says. The paranoia with him is his dominant emotion most days anymore and he thinks I am here to use him, take advantage or hurt him. Yet for a few minutes after an outburst he often has brief moments of pain and guilt because he knows he hurts me with what he says yet even then his feelings of persecution quickly supercede any feelings of remorse or guilt. With us it’s not a matter of when he lapses because now it’s every day and when you are that fearful that people want to hurt you any help to him isn’t help…it’s an attack, so getting counseling, changing meds, even simple suggestions like going for a walk have to be weighed heavily before they are suggested to avoid an outbursts. That is our situation. Yours will be different. I am asking, reading and learning every day. Not just about him ot the disease but about myself. One thing that has tested me more than anything is where my boundaries are…and how much of myself I can give without breaking…learning different ways to communicate and learning that although this disease directly affects their perception of things it does ours as well…of who they are and who we are. The absolute best I can give you is hope. I struggle, especially lately with that feeling…most days honestly I don’t feel it but there is always somewhere a glint of it. But you love your wife and fighting FOR her can help you hold on to that little bit even when you have bad days.

I’m glad to hear your wife is better. My daughter has been hospitalized twice and she mentioned that there is a recovery time from the hospitalization. My husband hasn’t been hospitalized but I still wanted to mention my daughter’s comment.
I also wonder if your wife has other safe people like a parent or sibling or friend besides you?

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Unfortunately no, not really. We moved across the country for my job a couple years ago and it wasn’t really a big deal then, but now it would be nice to have family nearby. The closest person to us is my mother which she gets along with really well but that’s still a half days drive and my wife doesn’t drive, never learned how and too scared to.

So I think down the line I will probably look into taking a job somewhere closer to family so that we have more of a support system, but for now it’s just us.

She called me this morning and sounded almost just exactly like herself. So clearly the medication is working and she’s making good progress. And she’s only been in a week which is nice so thankfully she will probably be out fairly soon. I’m trying to remember what it was like. I spent some time in an impatient unit when I was a teenager because I got really depressed and I can’t really remember because it was so long ago. But I just remember being really bored and smoking a lot of cigarettes on the patio.

@Sonofsz, can I ask what a “very high dose” is? My son is taking 500 mg of quetiapine and 15 mg of olanzapine, which I think is very high. Is it something like that?