Family and Caregiver Schizophrenia Discussion Forum

What has helped you cope with a family member diagnosed w/ schizophrenia?


#1

My sister was recently diagnosed with schizophrenia. She is 15.
I understand what her diagnosis means, but it has been difficult for me accept that she has this condition and will for the rest of her life, as it is very hurtful to see her transformation. She is currently at a mental health facility and is on regular medications.
I am not sure how to deal. I vent out to my partner, but I do not want to overwhelm him with my ordeal. I cannot seem to find anyone else that understands to talk about this topic. I been looking for support groups around my area of people that are going through a similar situation, but to no avail.
My question is,

what helped you, when you first learned about the diagnosis of your loved one?


#2

As a diagnosed who has reached a fairly good level of recovery after 35 years with paranoid schizophrenia I just want to stick my two cents in here and say that having unwavering family support through my entire illness is one of the biggest factors in my recovery. I probably wouldn’t be here today without their help.


#3

Good to know thanks for the input :blush:


#4

Biggest thing to know is don’t believe the doom and gloom that some doctors put out there… life will be harder, but it’s not hopeless. There are some members on here who are in college, have jobs, are married with kids… This illness is not the end of the world.

Of course one thing that helped my family is learning all they could about this illness. So they knew when I was having negative symptoms vs. positive ones.

www.nami.org

This organization has info about the disease and support groups in any region of the nation.

Support groups also helped my sibling cope with me… they had a save place to vent, a place that gave them resources… ideas…

www.schizophrenia.com has a whole section of FAQ’s, success stories, what this illness is like… all sorts of things.

What helped my family…
Knowledge
Out side support


#5

Research. Finding out that recovery really is possible. Emotional and financial support from my husband and community. I vented, I wept and wailed, then I got positive, determined and communicative. The more you build trust with your sister, the more you can help her and the quicker and more thoroughly she can recover. Only one thing - do NOT vent to her. Stay calm, firm, patient and hopeful with her.

This site has helped too. Seeing people with sz struggle and overcome their difficulties and live their lives took away all my fears and helped me help my son.

And his medical team. I have encouraged him from Day 1 to engage with them and cooperate. If he doesn’t like or doesn’t want something he should first discuss it with them before taking a decision. Battling doctors/nurses is stupid. If you treat them with respect you will get better treatment. If they start to actually like you, you get the best treatment. They are human too.


#6

Thank you all. I guess what gets me is when the doctor told us that it is rare for children to develop sz. Also, it is considered more severe, and she will probably get worse because it kills the grey matter in her brain. Knowing this has been hard. I want to help her as much as I can, yet I feel so limited. I keep thinking what could I have done different earlier to help her. However, it helps knowing I am not the only one dealing with this thanks to for the comments.


#7

If you can`t find a support group locally, try online. I work nights, so I come to this site at night. This forum has helped me more then anything. It is hard to digest. When a disease hits a family member, It takes a while to sink in. I do know that the more support you can get ( family,groups) the better it is for everyone.
Be there for your sister as best you can. Listen when she wants to talk. Good luck to your family. Come here often.


#8

thank you, likewise


#9

Actually, no. She may very well NOT get worse, if she is treated and if she sticks with her treatment. There is lots of anti-meds stuff on the Internet (“the meds cause diabetes, the meds destroy brain tissue, etc, etc”) but in fact all the things that the anti-meds crew associate with anti-psychotics all in fact happen as a result of the disease itself. Some people get diabetes while on anti-psychotics but UNTREATED people with sz ALSO get diabetes, and the same with all other things that anti-meds people blame on the medication. In fact, recent research says that what anti-psychotics do is to “normalize the epigenetic expression” of the genes responsible for sz. In other words they do have a preventative effect. SZ is progressive if it is UNTREATED, but it can be stopped in its tracks by medication. Once the disease process is halted or slowed, you have a chance of reversing the damage to grey and white brain matter because of the brain’s " plasticity.

If there is an expert on this site on neuro plasticity and how to fight sz with diet, exercise, meds and learning/studying (nothing builds new neurons better than learning new stuff at the same time as exercising and socializing - not a guess or a feeling but research has shown this) it’s MortimerMouse, who is very close to your daughter’s age. Read some of his posts. He has a book he recommends on neuro plasticity, too.

You will see also lots of other people on the boards who recommend healthy lifestyle, diet, study, socialization, etc and clearly their sz is not progressing. Plus, even in relatively unmotivated people, the disease process tends to abate in their fifties, for some reason, thank God.

So the art of managing it seems to be to get a good grip on it when you are young and let it do as little damage as you can. Eventually, your daughter can pull through. The sooner you establish the best routines for her with her cooperaio, of course, the better.


#10

Speaking as someone who has sza and who grew up with the illness in seeing it in my father.A medication regimen is very important. Most of my life my dad was unmedicated he was manic sometimes and had hypersexuality cheating on my mother during those times. Then other times paranoid and fighting with my mom about her supposedly cheating. My father’s hallucinations he never expressed much about them. He got on medication a few years ago but quit them in favor of alcohol and pot.

I was first diagnosed in 2010 and have always been on medication. What my partner said has helped her is doing something we’ve always done since before I got sick. We write stories together.


#11

Sz is a very hard and difficult illness. I have to say my kids, there dad, the dogs, socializing on Facebook with family and friends, even though it’s a challenge for me at times, because I unfriend family and friends. I’m only trying to keep positive people in my life. Getting on other social media sites around and definitely places like here are so very helpful.


#12

Dear,

first of all i m happy for you that you had conquered your illness and you are supporting others who is facing the same issue, i m seeking your support to help me to find such a way or guide me to help my dearest elder brother, he is 35 years old now, schizophrenia provoked when he was 14, and unfortunately we are living in developing world which facing lack of any kind psychological and social support, he has been hospitalized for once 15 years ago and after then he is not taking medications regularly, anger attacks occurred from now and then, i lost any kind of relation with him, for long time he hadn’t talked to me or let me be close to him, i tried for the last 3 years to build a connection with him and it failed when i had to defend my father from one of his anger attacks as he was about to beat him, and now we - me and parents - had to put his med in the coffee to help him out, i am sorry for any disturbance and i ll be more than thankful if there are any advice you can provide


#13

You have nothing to apologize for. I’ve read your post about 7 or 8 times and I’m at a loss for ideas or solutions for you. There’s no mental health services in your area at all? I would be careful about giving him medication without his consent and without him knowing it. I’m not sure if there is a law against that or not. You may want to find out or you might get in trouble somehow. Does he have a connection or relationship with your parents? Have you just all sat down and had a heart-to-heart talk with him about the situation? Just to lay out all the facts about the situation and get it clear about medication and all of your families relationships or your desire to have a relationship? I can’t think of anything else to say.


#14

Please visit my blog: http://cbdpush.com.
You can ignore the cbd part of it, but I encourage you to familiarize yourself with the information given. I am certificated as a Mental Health Rehabilitation Specialist, the blog is intended for people just like you who are attempting to understand and be proactive in their support of a loved one.


#15

Thanks a million for your reply, and I know my lame language delivered incomplete situation, there are mental institutions around but it is all about business, not a real care and too expensive, he will be there for month or two with intensive dose of tranquilizers, and he knows that, once I told him, why u rejects going to a hospital? He said you want me to be drugged and unconscious all the time, I couldn’t reply as it is true, he rejects going to therapy last time he has seen psychiatrist 4 years ago, so me and father going on behalf of him to modify his meds, and he is rejecting meds for more than 6 months now that is why we had to put it in his coffee, it is respirdal, he is so stubborn to listen to us, I know there are a way to reach him but cant find it, again I m so thankful you read my message and replied, it touched me you care to help


#16

Thanks a million I ll check the blog, and I m wandering if there is ability to refer to you in case I need some calcification?


#17

My son is diagnosed. I found that researching schizophrenia helped me a lot to at least try to understand what I am seeing. It’s still hard day to day when I get blamed for or lashed out at but it does help to know that his behavior(s) can be attributed to something. For my son it’s sz and addiction.

This forum helped me a lot.

I blog which helps me the most. A way to get my own feelings and thoughts out there.

I vent with my hubby sometimes however his understanding of mental illness is limited so sometimes it causes tension between us. We work through it though.

I think these links are very useful in getting a good understanding.
http://www.leapinstitute.org/ - 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 on YouTube for more videos

http://ourhealthyminds.com/family-handbook/communication/Building-a-collaborative-relationship-leap.html
Building A Collaborative Relationship “LEAP”

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/ - helped my understand delusions

(May 26, 2010) Professor Robert Sapolsky finishes his lecture on language and then dives into his discussion about schizophrenia. He discusses environmental factors as well as genetic characteristics that could apply to people who are affected. He describes schizophrenia as a disease of thought disorder and inappropriate emotional attributes.

http://www.nami.org/ - National Alliance on Mental Illness.
http://www.schizophrenia.ca/ - Schizophrenia Society of Canada

Can also find some very useful information here:
http://schizophrenia.com/

Overall I think acceptance is very important for family members. Allowing yourself to grieve for the person who was so that you can be open to discovering the new person that will emerge. Different is not bad, just different :slight_smile:

From my point of view there was no denying that my son had sz. The diagnoses was just a formality. I think having family accept and treat the diagnoses like any other medical diagnoses may help the person diagnoses to more easily accept as well.


#18

I will caution against putting medications in his food/drink. I do believe it is illegal. Also when/if he finds out that you have done this you will lose any and all trust.

Try approaching his medications from a different point of view other then treating schizophrenia because there is something wrong with him. My approach in the beginning was to help my son with anxiety and now that he is learning more about symptoms then it’s to help him with symptoms that are irritating him.


#19

People are worrying about you putting is drugs in his coffee because its illegal, but frankly beating up your parents is illegal too, and in the developing world generally the former would be seen as much more serious than the latter. I live in Turkey and there’s no way the police would charge the family for what they would see as a combination of self-defence and paternalism, both of which are seen as legitimate here. However, the trust issue is important. I think, like the others, you have to go at it through his experience of his symptoms and getting relief from them. People find this hard to believe but my son’s attitude to medication was partly softened by just getting him to take two aspirin when he was going into an episode. He got enough relief from that quick enough to make him realize that there must be something organic going wrong and be willing to at least meet the psychiatrist so the next time he started to slide into psychosis he went straight to the mental health team and actually asked for help and meds. He has adjusted them since and he’s doing really well. He has also met other people with psychotic disorders, which helped a lot.


#20

I m totally with u about putting meds in his drinks /food would lead to
undesirable consequences, we had to do it and his doctor told us to do to
avoid take him to mental institution by force, after 20 years he is
suffering from depression and SZ, still can’t find the right way to
communicate with him about anything specially his illness and the necessary
of his meds, and as you said about your son, they are different, and I feel
the only way to help him out to find untraditional way, I don’t know , I m
not sure maybe I m dreaming for a hope and can’t see it till the moment,
thanks for your reply and sharing your experience
On 4 Mar 2015 18:09, “BarbieBF”