Family and Caregiver Schizophrenia Discussion Forum

How do you know when you can expect a relationship on "normal" terms?


#1

My brother is currently in a very bad space… But he does have great and sustained periods of being lucid, witty, clever, funny, understanding, fun-loving.

In the lead up to his latest bout of being very low and suicidal, he stopped speaking to me. I had one phone call a couple of weeks ago but apart from that he’s been out of touch for about 3 months.

This was because I expressed doubts about whether he should move to the states to be with a (very) new girlfriend. I didn’t realise how serious the downward spiral was at the time.

How do you cope with balancing “normal” relations when they’re well and adapting to their condition when they’re not? How do you switch between the two? How do you cope knowing that they can’t help it, but that what they’re doing is the sort of thing you’d never accept from other people?


#2

Welcome, unfortunately there is no way to predict when a person with SZ will be “normal” and when they are not. Leaning to cope with the sudden change in behavior is something you will have to work on within yourself. Just remember he is ill and can’t control it. I know it’s hard, but loving him is about all you can do. If he is taking meds, please encourage him to continue. When they start to feel “normal” they feel they don’t need the meds and the downward spiral starts. I am also a family member dealing with someone with SZ. I have been dealing with it for over 30 years with my mother, and it never gets easier. I wish you a lot of luck.


#3

Thank you for the support and wishes!

That’s an answer I was expecting but still haven’t emotionally found a way to cope with!

I keep hunting…


#4

It’s not something that happens overnight. You have to give yourself a break. Even though they are the ones that are sick you are going through it with them. Give yourself a break and time.


#5

Hello, I hope you don’t mind me posting. First off I just wanted to say I’m sorry you ended up cut off by your brother. Hopefully you will find a way to begin to rebuild that bridge between you. Maybe write a letter of support or trying to let him know you still care. I like letters, they can’t be remembered differently as easily.

My oldest brother was diagnosed when I was rather young. Now that I’m growing up, I’m beginning to learn many things about this illness that I didn’t understand before.

I don’t know if I have any advice that will really help, but I will try my best.

As far as a “normal” relationship? That took some healing and refocus. There was a time when I was trying to find a cure, I was trying to have all the answers. My all consuming conversations weren’t helping my brother as much as deeply irritating him.

I read about Sz, I talked about Sz, I learned as much I could, collected the books, took in as much knowledge as I could, and I still couldn’t help my brother. I was so angry that he seemed to be resisting my help.

I didn’t really think that my brother didn’t want to always talk about his illness. He wanted to leave that at home and talk about comic books and art and the night sky.

I eventually learned to just let it be and hang out with him and talk about what he wanted to talk about. Eventually, it did get around to his Sz, but in his own way, in his own time.

Learning as much as I could did help me identify was this illness was like and what was other factors. Learning as much as I could, helped me adapt between the “normal” relationship and crisis management.

When my brother isn’t doing well, I have to be patient and ride it out. It’s a bit scary when a loved one like an older brother begins having trouble functioning and making sense. I always imagine, no matter how scary it is for me, it must be really upsetting, frustrating, and scary for him.

How do you cope knowing that they can’t help it, but that what they’re doing is the sort of thing you’d never accept from other people?

The way I cope is with help. First, my sibling support group and then my own therapist has been a huge help with ideas. I also cope because there’s not much else to do. I love my oldest brother very much and I want to help him when I can. The whole family is in this together.

As far as some of the dark past, and some of the parts that have hurt the most, I just have to keep calm and then go vent elsewhere. It’s painful, but I had to just walk away sometimes.

I’m thinking the worst way to try and cope is alone. This illness is too big to be taken on alone.

There are sibling support groups through Nami.org, and that is where I started getting some help, some answers and some ideas how to try and keep our friendship afloat.

I hope you and your brother can rebuild your friendship and start your healing process together.

Thank you for letting me post.

www.nami.org -
http://www.nami.org/Content/ContentGroups/Helpline1/Coping_Tips_for_Siblings_and_Adult_Children_of_Persons_with_Mental_Illness.htm

http://www.siblingsupport.org/ -


#6

I’ve said this in several places, but I think the key is detachment with love. You have to accept that you don’t have a lot of control over your brother. Do your best for him, but don’t let him bring you down.


#7

Hey kidsister, that was incredibly helpful.

You’re so right about letters - he’s taken another turn for the worse lately and a side effect of this is that he’s been busy rewriting history lately and becoming increasing delusional, claiming he didn’t really have a diagnosis and so on. Letters might help reaffirm our relationship at least!

Your advice helped a lot, thank you… partly because I’ve also been in therapy lately and as much as people tell you that you need support too there’s a bit of your brain saying, but I’m not the one who’s ill! But you are someone who’s hurting, and it has been so so helpful.

I was also thinking about going to a support group I found… will go this week.

It’s funny isn’t it - there’s such stigma about the illness that he tells very few people… but I have to tell people in my own circle for my own sanity and I also think in some small way perhaps its raising some awareness too.

Crimby, detachment with love is a great thought. I’ve been feeling so guilty about having to cultivate some sort of detachment - at the moment, distance is enforced by him anyway - but feelings are harder! It helps so much to hear your experiences - it makes me feel so much less guilty.

Thank you everyone! Look after yourselves!


#8

Hello @t_ruth-

This part caught my attention. It’s also interesting how different people handle this. My brother is the opposite of your brother when it comes to telling. My brother seems to like saying it. He says it so casually that I don’t think people believe him. I’m actually very cautious about who I tell. I don’t like it when people want to meet him purely because of his struggles with Sz.

Our parents are nice people and they are very supportive of my oldest brother, but there are times that I just don’t think I can look them in the eye and talk about some of the stuff I need to talk about.

My support group was a lifesaver. When I was young and given a chance at therapy, it just felt odd. One adult and one me, and a lot of questions about how I feel.

The support group was about 7 girls close to my age, all with siblings who were suffering. I got the most answers, ideas, resources, and peer comfort from my support group.

The support group felt more secure as well, there was no way the facilitator would be talking to my parents about what was said.

As far as the letters, I got in the habit due to my brother. They do help when my brother’s perceptions and my own aren’t even close. He kept them too.

Things are different with me in that I am currently living with my brother. I see him every day. Yet I still write him letters.

I am hoping you will check back in and let us know how you and your brother is doing. Hope things get better soon.
Thank you for letting me post.


#9

Hey there,

Unfortunately news is not so good. He has gone down hill again … and becoming more delusional than I’ve known before and losing insight into the fact that he is ill (can you lose insight? it seems that way).

He has said odd things to my mum recently …

About four years ago when we were both at uni we were each travelling in Europe (separately) with our friends over the summer. A few days before I was due to fly home from Istanbul, but he was only a week into his month’s trip, I got a call from him out of the blue to say he was in the same city which was absolutely not the plan for his trip. Something about the strangeness of his environment has set off his hallucinations and he had asked the guys he was travelling with to divert their trip to get to me (he hadn’t told them what was up). By the time I got to him he was barely coherent and I got us both on a flight back to London the next morning. He’s now saying that he was just ‘dehydrated’…

…More worryingly, he is now saying “well of course I was never diagnosed with schizophrenia anyway” !!! This is really worrying because of course he got diagnosed when he 18. Since he was an adult we have of course never had access to his confidential medical records… so have I ever seen ‘proof’? No. Do his symptoms suggest he is? Yes. Do I trust his former self when he told me about his diagnosis more than then young man who’s in crisis at the moment? Yes. But can I ever be 100% sure? … has anyone been in this situation? Is he just losing his insight?

And then, on top of everything, he got on a plane to Seattle this morning to go and see a girl who has not been good for him in the past. He met her really recently and then was suddenly flying backwards and forwards from London to the US to see her. She’s a lot younger and didn’t seem (and this is harsh but what the hell) as nice / clever / pretty as other girls he’s dated and we couldn’t understand the attraction until he told mum that she is bi-polar and therefore he thinks she understands him when no one else can… she started university this Autumn and cheated on him in Freshers’ Week in a depressingly predictable way. Although not the cause of his depression (it’s been building for a long long time I think), it seemed to be a catalyst for his descent into a suicidal phase… he wanted to die because of her. Then there was a week in which they has several 17 hour (no exaggeration… it was terrifying) Skype conversations so I think we can safely say that he probably isn’t a healthy influence for her either. He had eventually stopped contact with her and then started to improve and stopped self-harming / wanting to die …and now he’s just upped and gone off to the states to see her with no warning. I’m so worried that this is just going to tip him over the edge again and then he’ll be god knows where and this time refusing to believe he’s ill. I don’t even know how he got the airport since he’s been barely able to get to the corner shop and feed himself lately.

I keep having dreams that he’ll hurt himself. I feel like we’ve lost him. My mum casually mentioned that he’d got on a plane this morning in a 3 sentence email. She acts like she thinks it means nothings to me.

I’m sorry guys it’s a really really bad day.

I hope so much for better news soon.


#10

I’m sorry… Yes insight can get worse as symptoms take over. :frowning:


#11

I am so sorry to hear about your brother. You must be so worried! It is so hard when we see loved ones with sz make choices that we know are dangerous to them, and we can’t get them to listen to reason. It’s a very fearful, helpless feeling. Please let us know how he’s doing and how you’re doing. I hope he soon gets even a moment of clarity which will send him in the direction of help.


#12

@t_ruth

I wish there was a suggestion I could offer to help you when it comes to the lack of insight.

Anosognosia (Lack of Insight) is one of the symptoms that makes this illness so frustrating. Just when it seems our loved one is coming back to understanding then the insight fades away again.

http://www.nami.org/Content/NavigationMenu/Mental_Illnesses/Schizophrenia9/Anosognosia_Fact_Sheet.htm

Another symptom that makes me so sad at times is the delusions that hit him. He will admit as well, that they complicate his memory. There are times when my brothers symptoms flair up and his perceptions and mine aren’t in alignment.

Sometimes I feel like some of our best moments were altered and stolen from us by this illness, with my brother now remembering things differently then how I did.

I realize I have to take into account that some of the things that really stand out for me, happened when I was 6 to 10 years old and he was in the worst of his onset years. Our history needs repair on both our ends.

I write a lot of our moments and interactions down now so when my brother does come back to level, he can read through and hopefully we can get back to our common ground between what I remember and what he remembers.

It seems like you need to tell your Mom that you are worried about your brother and you do want to be part of his healing process and to please keep you informed of things.

I hope there are ways you can contact him with a least small gentle notes of support.
Just let him know you do want to be a friend and he can talk to you with no fear of judgment.

As far as communicating with your brother as BarbieBF says: Using LEAP may help:

Please look at these sites:
http://www.leapinstitute.org/1 - under resources are free videos on using LEAP
LEAP is a way of communicating to build trust. Listen-Empathize-Agree-Partner.

http://dramador.com/ - Dr. Xavier Amador is a clinical psychologist whose brother had schizophrenia. He is the founder of the LEAP Institute. Wrote the book: I’m Not Sick I Don’t Need Help! Can buy from his website.
Search Xavier Amador and LEAP on youtube.com and you should find some long videos

http://www.treatmentadvocacycenter.org/index.php - under problems you will see anosognosia
Anosognosia looks like denial but is different.

http://lesswrong.com/lw/e25/bayes_for_schizophrenics_reasoning_in_delusional/2 - helped my understand delusions

I really hope communication will start between you soon. I hope your Mom will help facilitate that.