Schizoaffective fiance.

[soylola]

My fiance is a recovering alcoholic (just celebrated three years of sobriety!). Seven months after he quit drinking, we got engaged. A year later, he had a psychotic break that resulted in hospitalization (his first during our relationship, but second in his life). I didn't think we'd survive it but we did. Then, eight months later, he suffered another, more severe psychotic break that resulted in a longer hospital stay. His persistent delusions led to a change in diagnosis from Bipolar I to Bipolar I with psychotic features to finally Schizoaffective.

Our relationship has deteriorated to the point where we've been on the verge of breaking up for the past six months. My fiance is on his fourth leave of absence from work and we live in constant fear of him losing his job. His medications are so sedating that he sleeps 12-15 hours a day. In the last year, we've had sex three times.

Why aren't there support groups specifically for couples dealing with these types of illnesses? The one support group I did attend was filled with codependents and left me so rattled that I haven't been back since.

This disorder is very lonely, not just for the "consumer" but also for their loved ones. My family doesn't think I should marry this man. His family refuses to acknowledge that he even has a mental illness. My friends have been wonderfully supportive but I've been so unhappy for so long that even they are beginning to give up on him.

My fiance is a great guy. He's smart, he's funny, he's romantic (if not sexual). He tries to take care of me. He doesn't cheat, doesn't do drugs, doesn't abuse me verbally or physically. Sometimes he tries to lie, but it's mostly little kid lies, like he's afraid of getting in trouble (sneaking energy drinks, which he's not supposed to do; looking at math on the Internet, which is his intellectual porn and usually a sign that he's heading into psychosis).

But the two breaks have left him cognitively incapacitated; he has issues with memory and even following simple instructions. I have to accompany him to many psychiatry appointments because he doesn't write down his doctor's instructions accurately or even remember what's been going on over the past week, let alone past month.

I work one full-time job and two part-time ones plus freelance work when I can find it. My fiance has tried to become a good house husband on his last leave from work, taking over the grocery shopping, cooking, and cleaning. These things help, but there are so many times when I feel like the bad outweighs the good.

When I think about breaking up with him, it makes me physically ill. He didn't ask for this disorder. We didn't even know he had a mental illness until after we were engaged.

But I'm nearly 35 and I want to have a child, and I don't think I can have a child with this man. I also fear that I can't spend the rest of my life with someone who needs so much care.

I am constantly going back and forth on this, and it's exhausting. I honestly don't know what to do. I do see a therapist myself and have on and off since I was 17; I suffer from depression/anxiety myself. I keep thinking that "for better or for worse" means just that, and now we are in a "for worse" phase. My mother likes to remind me that we aren't married yet, but what kind of person would I be if I broke up with the man I promised to spend the rest of my life with just because he has an illness he can't control? He sees a psychologist 2x/week, sees his psychiatrist regularly, takes his meds. He's trying to get better.

I keep waiting for a miracle - the right drug cocktail, the right therapeutic technique. For a while I was convinced he had sleep apnea and that was why he was struggling to stay stable. The test results told a different story. Now we're looking into a psychopharmacology consult and a meeting with a neurologist. But even his psychiatrist feels we're running out of options, and has prepared us for the fact that he might have to go on full-time disability.

Any advice/insight would be appreciated.

[Onewithwings]

So sorry you are in this situation. I don't have any advice, but I hope something works itself out, it sounds like such a sad situation.

[soylola]

Thanks for reading and responding.

[NYCDoglvr]

My heart goes out to you, that's one tough situation. Certainly aren't any easy answers. I'll toss out some of my own experience.

I'm both an alcoholic (19+ years) and suffer from major depression which is right now fine because of medication. The first half of my sobriety was good ... I built a career, made friends and had a relationship, although it was a pretty dysfunctional one. The past four years have been beyond horrible. Went into a severe depression that was so bad I messed up work completely and lost the man who has been part of my life for 25 years, the person who has been most supportive.

It has been two years since he left and I can be more objective about it. He left because he couldn't deal with a mentally ill person any longer. Actually I was worse than ever before, going into rages frequently, threatening suicide. No, I didn't ask for it, I couldn't help myself either. All of those terrible things changed, but it was after he left.

As an alcoholic I'll always want someone to take care of me and that part was terribly hurt. But some part of me really loves him. I want him to have a wonderful happy life and it can't be with me. This is what I know: in the end we are responsible for ourselves. You can do nothing for your boyfriend, you're powerless over his disease.
At the same time, you have a life and you owe it to yourself to make the most of it.
It doesn't seem to be with this person.

The big thing is to understand: we all have one life, that's all. If we don't do what we really want to do, nobody will care.

[Isaiah]

Shucks, I wrote a reply and accidentally backed out of the page before I hit send.

With the schizoaffective, sadly I have no advice or insights. Only that I also hope that a good course of treatment will be found soon.

I learned the hard way a few years ago after a lot of pain, confusion and drinking that kicked off my addiction that love and care are not the only things it takes to keep a relationship together. Maybe in the ideal romances, but among more fallible humans not so much. I am not saying at all that you should split up! Only that, if it truly comes to a point where that seems right, it wont be because you or he didn't care. It's hard where blame can't be ascribed.

But on keeping things together. I wonder if maybe the engagement isn't putting pressure on you...? Seems you have a difficult problem to deal with in the immediate present; weddings are so future oriented. Perhaps postpone, temporarily cancel, defocus for now (not forever)? Just a possibility, I have no idea if that makes sense for your case.

And let love make you two creative. I am sure this must be incredibly hard on both of you, but try to keep focused on the good things of your relationship together. I think that's the frame of mind to be in if you want to come up with some new compromises, ideas, etc. on how to keep the relationship, household, etc. together.

Hope it works well and works soon.

[Morning Glory]

I work with clients with Schizoaffective disorder and it can be a real challenge. One of the biggest struggles is getting the doctors to listen to us. Some of the medications make things worse. The side effects can mimic the disorder. We finally found that one of our clients was having stokes that didn't show up on regular tests. They gave him a MRA and finally saw it.

I think the neurologist is a great next step. I would ask for a MRA and MRI of the brain to rule out a physical condition. Read the side effects on the medication. Watch for side effects. Welbutrin caused one of my clients to lose all touch with reality and all his mobility within 5 days. He was fine after we finally convinced the doctor to take him off of it. Abilify and Haldol had less similar side effects. He is now on other medications and doing fine. It is different for everyone and the doctors we dealt with just couldn't understand the side effect issues. That was in 3 different hospitals with 3 different sets of doctors. Don't lose hope.

If you have doubts about marriage then I would hold of until you are sure. I can really understand why the thought of leaving would cause you agony and emotional pain. That is something you can work on until you are comfortable with a decision.

Lots of hugs,
MG

[Mattcake]

Hey Lola Welcome to SR.

There's nothing fair about mental illness. As you know, it's cruel and taxing, for both on the person suffering from it and their loved ones.

First of all, *please* tend to your own needs. You mentioned anxiety and depression - make sure to keep those in check. Accept help, don't feel undeserving or selfish for doing so.

Originally Posted by soylola

My mother likes to remind me that we aren't married yet

However well-meaning, sometimes family and friends simply don't get it, and can become a source of disquiet.

It's true that you're powerless over your boyfriend, yet of course you can still choose how to act. Like Isaiah and Morning Glory said, maybe you could consider putting off your marriage for a while? How do you feel about that possibility?

If at all possible, your fiance should consider getting a thorough re-evaluation to confirm his current diagnosis. When it comes to mental conditions, a proper diagnosis is indispensable, and a second opinion is almost mandatory, even if it's just to make sure. I learnt this from personal experience, I wasted many years getting treated for one condition when, in fact, I was suffering from something completely different.

The newer antipsychotics seem to treat schizoaffective disorder quite effectively - aripiprazole (Abilify) and paliperidone (Invega) in particular. The "good" news is that, unlike most other mental health conditions, finding the right medications should be a relatively quick process. If his current medication is causing so much impairment, he should consider asking his doctor to try something else.

The current treatment of choice is medication coupled with CBT (cognitive behavioural therapy).

I'll skip the rest of the psychobabble, though two points might very helpful for the two of you: when you're talking, try to be as concrete as possible and avoid being ambiguous, as double meanings are a huge cause of anxiety for people suffering from SchzA.

Positive reaffirmations are also immensely helpful, for instance celebrating his three years of sobriety. The thing here is to avoid falling into codependency - contrary to popular belief, it *is* possible to be romantically involved with someone suffering from <insert label here :-) > without becoming their caretaker/becoming responsible for their existence; the key is to mind your boundaries.

I can see why you're struggling so much with this decision. Sounds like he's a good guy Take your time. If you decide not to marry, do you think that you would still want to be in contact with him?

Whatever you decide for the future, right now you're lucky to have each other

M.- this is a good resource: NAMI: National Alliance on Mental Illness - Mental Health Support, Education and Advocacy

[soylola]

Thanks, everyone.

Just to clarify: while we're still engaged, we don't have a date set for the wedding and haven't made any plans to go forward with one for about a year. Both of us are waiting to see if he can get/stay stable, hold down a job, etc.

MG: I'm hoping the neurological consult at UPenn will shed some light on things. I've often wondered about seizures and such. He did have an MRI not too long ago that didn't show anything out of the ordinary, but we haven't exhausted imaging options. Ditto for what you said about the drugs: he's on a pretty heavy-duty cocktail right now and we do wonder if that's part of the issue. Yesterday I asked his psychiatrist to get him off the Wellbutrin, so she reduced it by half and is decreasing the Zyprexa slightly; if he stays stable on that she'll consider changing the antidepressant but at this point SHE is the one pulling for the psychopharmacological consult.

I do have to struggle with codependency myself - my father was a crackhead, my mother is still a pothead and functional alcoholic - so I try to draw some boundaries. Like, right now he should be making calls to UPenn but is sleeping, and I won't make those calls for him. I do make sure he takes the right meds on time, but am trying to limit exactly how much I care for him.

It's the fear that's crippling: fear of him losing his job, fear of him going into psychosis, fear that we'll never have passion in our relationship again. Fear that I'll never have a child of my own, or that if I do, we'll have given this child some really, really, really screwed up genes.

There are things I want in my life, like to travel, and have kids, that I'm not sure he can give me. He's not even sure he can - we ended up having this discussion last night. He told me he's been thinking of breaking up, too, because he knows I deserve more than he can give. When he says these things it breaks my heart even more.

Thank you all for reading/responding. It helps to know that there are others out there.

I am going to attend a NAMI support group in January. I hope it's better than the last one I tried.

Thanks again.

[spryte]

This condition can be very isolating, so thank you for reaching out and talking to us.

When someone has cancer, there are support groups and people send pies and flowers. When someone has alcoholism, there is AA and Al-anon. When someone has delusions, it seems like everyone runs away and leaves the suffering individual and the immediate family entirely on their own.

Schizoaffective disorder can be very challenging to treat. I have seen some people tinker with medications for years, and finally get it right () and it is such happiness. I have seen some people find the right treatment, but with a serious impact on their working lives (ie. the meds deal with the symptoms, but they can't work in the job they used to, so they need to change jobs). I have seen some people find the right treatment, and it leaves them unemployable. I have seen some people refuse treatment, and it results in tumultous and sometimes tragic results.

All these changes are a stress to the person with the disorder and to the family. It can be a maze how to navigate through it individually (keeping in mind personal dignity and needs) and together (keeping in mind committment and the importance of family).

The meds take some time to tinker with, and the meds are better today then they have ever been in the past. Give it some time to tinker with them.

In the meantime, consider reaching out to your local group. Most of the groups dealing with schizophrenia and schizoaffective disorder are very family-focused, in my experience.

[tarryon]

Hi, I also have three years of sobriety and have schizoaffective disorder. I have also gone through many problems.

I have found good meds to really help. I also wanted to mention there are SA meetings. I also found great support from Schizophrenia.com, Indepth Schizophrenia Information and Support

Terri