How do I help.....how do I hang on?


#1

How can I stay connected to someone when they are struggling with managing their meds - all while they are portraying a seemingly “normal” life to coworkers (keeping job is #1 priority)?

After nearly 5 years of closeness and intimacy, things started to change. He was unavailable, not responsive to messages, tired all the time, grumpy, then he told me his secret. He has schizophrenia and was struggling with his “cocktail” of medication. It wasn’t me, it wasn’t us, it was him. He asked me to be patient, that this would pass. Its been 3 months of waiting.

He has only shared this information with 3 other people in his life, his Mother, his former boss and his ex-girlfriend who could not cope with his condition and left him. Now he was telling me. Because he didn’t want to loose me, because what we had was so important to him. He promised to never push me away, hide or hate me.

He promised everything that eventually he started to do.

The hiding from me, the not communicating and now the hate.

He hide the entire week of Thanksgiving, and I spent it alone. waiting to hear from him. I honestly thought he may have committed himself and was hospitalized. When I did find him, he was defensive and very emotional, and he would only speak to me on the telephone or online. He was depressed and sad.

While I’m committed to supporting him, he fails to see any impact his behavior has on those around him (don’t take it personally he says, I’m not trying to hurt you on purpose). He doesn’t want to be reminded of the condition he has struggled his whole life to hide, and to see or hear my hurt is too much for him. I now feel his hate.

I wish there were more live support groups for friends/family, where I live there are only 2 (an hour away each) and they meet only 1 time per month.

I want to support him but I’m lost…the thing I loved most about him is the thing that is tearing us apart - his mind.


#2

say you are willing too give him some time.

with time i mean months or years. maybe you can visit the psychiatrist together someday


#3

I think the key missing thing is communication, which was the basis for our relationship from day one. We talked constantly and endlessly - morning and night, he was my best friend and knew all my secrets. He cared enough about what we had to share with me something very private, and I in turn accepted him with love and support. Something I thought I could give unconditionally, until he pushed me away and went into a place of sadness that is dark and angry. He knows I’m here, that I love him and would do anything to support him, if only he would include me in his life and personal struggle. Its so upsetting to see how hard he works to hide his symptoms at work, its exhausting for him. I know he is scared.

I will wait but I’m afraid that waiting years would result in my not feeling the same way anymore, I’m lonely and I miss him. We already talked about this, when I can’t wait any longer he will let me go.


#4

The fact that he trusted you enough to tell you about his sz says a lot. He is right about it not being you or your relationship. Also it’s not him either. Sometimes sz has a way of taking over and it’s no ones fault. I don’t know how much research you have done on sz or even medications. Sometimes it can take up to 8 months to get the full affect of new medications. While he is going through these rough times he can not see the impact that it is having on others. He is having enough trouble dealing with his own emotions. Based on what you have typed here I would say that he is handling things very well. He knows that he has sz. He knows that he needs medications. He is trying to work it out. He knows that he has hurt you and is trying to protect himself from that. It seems he also trying to protect you from what he is currently going through which is admirable. Only you can decide if he is worth waiting for or not. He is not lost just coping with things that are at the moment beyond his control. Recovery from any relapse does not happen over night. It takes time. When my son experiences what I call hiccups in his recovery then I have to accept that during those times he can not be responsible for my feelings. The things that I do everyday that I take for granted are a struggle for him. Try to understand that he isn’t trying to push you away. Maybe this analogy would work. Put yourself in a nightmare that you can not wake up from full of your deepest darkest fears. You have the choice to deal with this nightmare alone or expose someone you love to your demons. Sorry that was a little dramatic. He knows that you are there and he knows that you love him. I think you are helping a lot more then you know.


#5

Hi Jules,
I hope you don’t mind me replying. I am the youngest sibling of a man who is living through undifferentiated sz and was diagnosed when I was about 6. My brother is 11 years older then me. I usually don’t post here, but I do answer a lot of private messages only because my brother is on this site big time and I don’t want to post anything that is too personal. But I feel that for this one, it will be OK.
( Yes, I checked with him so he won’t be too surprised) :wink:

You’re guy sounds great. I do mean that honestly and with a kind heart. It sounds like he’s working really hard to get a handle on this. BarbieBF is correct, he’s handling this very well. From what your typing it really sounds like he’s working his butt off. The being unresponsive, tired, grumpy sounds just like negative symptom or reactions to the meds. It can take a lot to get that balance just right. It does take a lot of patience.

When I was about 10, my brother disappeared on me for a few months. I was hurt and confused. I love my big brother with all my heart and he is hero to me. But he disappeared. I couldn’t believe he left me. ME! His best friend and side kick. ME?! the partner in all his capers and adventures. When he was found and came around again he told me he was facing a an arch villain so dastardly, so ugly and evil that he just couldn’t risk bringing his side kick into the fight. He didn’t want me hurt. (The dastardly villain was his SZ) Every time he withdrew from our parents and I, he said it was to protect us from the worst of this disease. Just talking to your guy on-line and on the phone is helping him. Letting him know that your still there for him is helping him.

My brother gets very upset with himself when an episode occurs. He’s embarrassed and he doesn’t want me to see him at his worst. When we were younger he would lock himself in the airstream trailer in the back yard and hide from me. I wouldn’t try and force my way in all the time. I would just slip little notes in letting him I’m still thinking about him. Sometimes when he would re-emerge I would WANT to ask a 100 questions like… “how are you feeling? are you taking your meds? what can I do? how do I make this better?”

But that would have just sent him back into himself. He would have withdrawn at all that. But (I know this sounds odd) but sometimes just ignoring the SZ and going out just for a 20 minute sandwich is the very ticket.
It was something he said really helped. He just came off a traumatic episode. Reliving it, explaining it, talking about it right then was just not something he even had the strength to do. So just having a sandwich and talking about a comic book or anything other then the sz made it so next time he was out for 30 minutes, then an hour and then a day and two days…

BarbieBF has mentioned in many of her post that she approaches her son in a calm and level manner and it’s the same with me. I just don’t keep talking about it. (with him) I just hang out with my brother. Because, yes, it was all new to me, I wanted to discuss every detail. But he’s already been living with it for a while and he wanted to feel like there was more to him then SZ.

One thing that I feel put him at ease around me more was I was getting old enough to start learning about the more clinical side of SZ. I was given books to read and talked to by therapist and taught WHY my big brother was doing what he was doing. I didn’t discuss this with him. I didn’t sit down with the book and say, “Well, it says here you also do example a. Interesting.” I would never do that. I can only imagine how mad that would have made him. He already felt like a science experiment due to the detailed conversations he was having with his doctor. He wouldn’t have put up with this from family too.

I discussed stuff with my SZ support group and got ideas on how to reach my brother and how not to get my feelings hurt all the time, and how to just hang out with him and begin to recognize when something is triggering. That really helped me a lot. I wasn’t afraid of him. If I ever got upset over something he did that I didn’t and couldn’t understand… Learning about negative and positive symptom helped me see that he was still working his butt off.
Learning what I can and getting new ideas helps me appreciate everything he does for me.

It’s also built our trust so when he doing well, he will open up more… when he is able.

Sorry for book, like I said, I do answer personal messaging through this site so feel free to ask anything. I hope that you also get some ideas… he sounds like a good guy.


#6

Thank you so much for your reply - your description and explanation is exactly what he was telling me that I just couldn’t accept 100%. I couldn’t accept it because it didn’t make sense to me…but its making better sense now. I know what I need to do to be there for him, your reply has offered me some clarity and I truly appreciate it.


#7

I loved the book - and the time you took to explain. He has asked me repeatedly to not discuss sz when we are together or talking - to focus on being happy and doing fun things together - but I was allowing my personal hurt to drift over to questions or situations that only reminded him of his issue. I interpreted this as “I don’t care about how you feel, leave me alone” and that was wrong. I feel terrible to have done that, and it only aggravated the situation.

In my personal research into the condition and meds, there seems to be a wide variety of symptoms and side effects. I have tried to educate myself with what I have found online, and he has told me of his hallucinations and constant anxiety over unrealistic thoughts/threats. He told me that he is constantly talking himself down from his head telling him things that are not true - that he has a process he goes through to determine if its a real threat or his head playing tricks on him. And that its exhausting.

I can’t explain how much I appreciate your response and how better I feel in understanding what he is going through - and what he needs from me. I feel inspired to hang on and support him, not as lost as when I posted a few days ago.


#8

That is a huge vote of trust. Wow. He’s opening up to you. The fact that he’s told you some of his processing is huge. I’m so glad you feel better. He sounds like he really loves you. It’s not easy, but if he’s at this point, it’s a good sign.

I hope you get to call him up and tell some jokes or just go do something quirky. I take my brother to odd shops and weird things around the city.

I call ahead and check when their slow time is so I’m not taking him into a rush of people. I like to make sure there is an open space near by so if he feels overwhelmed he can walk it off. I don’t tell him this. Though he knows it’s why we always go out on Sunday mid mornings.

My brother hates his SZ and he really really hates it people ask about his meds. He takes that as a sign of judgement on what he’s doing. He does get sensitive if he feels that is the only trait that defines him. He is working hard to get back into life. He does tend to avoid family members who don’t let it drop. Their loss.

I was taught to look at this as the same way as a cancer. A cancer survivor wants to talk about what they can do, not what they can’t do. They want to feel that life will get back to normal. So dwelling on the cancer can be depressing for them.

I am so glad your hanging in there. :smiley: :thumbsup:

If your new to the site, you might not know how to private message on this exact format…
First you have to put in something like 5 posts… which I think you have by now. (spam fighting measure)
Then if you click on the little picture of the person posting it brigs up a button for private messages. The rest is just like e-mail.