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How long have you been on this journey?


#41

This started on 4/13/2018.
With Hyper Religion. Had a episode and was taking to hospital and than taking to a behavioral center for a week , cannabis was found in system my son 23 and an awesome young man . Just these month actually a month deep in this, and with medication he doing better, but still in denial that nothing is wrong. I’m coping day by day. So hard , but I will never leave his side. He started to go out with brother cause he wanted to go dancing, so all looks like it’s well, but I see a different son like he doubts his actions, but always tell him not fear to make a mistake.
We even thought nothing was wrong after first episode but i realized he needed to take meds, and so far doing well but I’ve noticed heat really effect him. I want to be apart of this forum not that well at writing so sorry for not writing complete sentences


#42

Hello Dadlove. Welcome.

Things can change and develop in so many ways over time, so try to keep a very watchful eye on your son, and do everything in your power to keep him on anti-psychotic meds. Learn everything you can about psychosis and how it can look in different people. Knowledge will help you all.


#43

Dadlove, welcome to the forum and I am sorry that your son has an illness that has brought you here. Your son’s psychosis is new so you have a 25% chance, if you can keep him medicated, that he will totally recover.

I know that I could see my son was different from before.

The symptom, anosognosia, causes his denial of his illness. He is not denying it, he can’t see it.

Like@Linda said above, Dr Amador’s book shows us how to communicate initially with someone who is suffering from “lack of awareness or insight”.

If we tell them they are sick and things aren’t real, it can make them afraid of us.

Best wishes, Hope


#44

Great book must read also watch his beyond the glass ceiling on you tube takes 30 minutez


#45

7 years 4 years of hell until clozapine


#46

I’ve thought long and hard about this question- for the 31 years since my twin was diagnosed shortly after high school. -advice I would give to my earlier self.
My brother has a monthly injection of his medication these days- but still smokes weed on a regular basis and thus- still shows schizophrenic characteristics. With the proper medication and dosage my brother is still cruel and manipulative. It’s part of being schizophrenic. His maturity level was arrested when he started showing symptoms back when he was 17 or so. He basically see’s the world now- as he did as an angry entitled teenager. We don’t have a relationship now. -not for a lack of trying on my part. He still can offend and inflict emotional pain with ease. Though I know his attacks aren’t personal- that it’s simply his disease talking- it’s still difficult having him as a part of my life.
What advice I would give myself if I could go back to those teenage years would be this. Life will be drastically different from now on. Your family member and their needs are going to feel so intense and extreme- that it will feel cold and heartless to think of your own needs. Most likely your parents might feel so overwhelmed that you might feel forgotten. My own parents and family felt so overburdened that they asked me to take a greater role in my brother’s well-being. Most likely you are going through long periods of feeling overwhelmed when you try to imagine the future with your mentally ill family member. Most likely a person will feel depression and anger at finding themselves in this extraordinary scenario of responsibility. You may have friends who have no idea how to address your problems with you or simply don’t feel comfortable spending time with you anymore. -I confess small talk became nearly impossible for me back then. Laughing did too for a long period. So did dating. Learning that I was not responsible for causing/creating my brothers illness took me many years. That I could not control how his illness manifested each day. Looking back- I’m surprised my family maintained a degree of sanity in ourselves – in the face of so much intensity and grief.
The best advice I can give- is to forgive yourself. -because most likely you’re going to go through stages where you resent your family member on some level for being mentally ill. You may find yourself fantasizing about what a normal life with a normal family might be and that’s OK. Really. I have felt shame and guilt at these feelings. -it even feels weird to discuss them here. My brother won’t get better. His illness won’t change. But we as siblings/parents are here too. Not having schizophrenia doesn’t mean we as family members or parents don’t deserve a full and meaningful lives ourselves. Finding a way to forgive yourself for having perfectly rational emotions is a process for me. It hasn’t happened entirely. Not sure if it ever will. We as human beings still on this earth deserve peace/kindness/hope and love. Just as much as anyone. This disease is terribly cruel and a huge transition for any loved one. There isn’t a single path to peace. Kindness or compassion to yourself. That’s all.


#47

Thank you. I need to print your words out and use it as a handout. Hope


#48

I have been on this journey for about 9 years. We were “lucky” that our daughter’s first psychotic break didn’t come until she was in her early 30’s. She has had multiple medical issues and was already on disability for those when this occurred. She has been hospitalized many times and I have no confidence in the mental health system at all. I am a health care worker (pharmacist) and see no light at the end of the tunnel. Her sister thinks she is manipulative and will now have nothing to do with her and her father is threatening to kick her out of the house because she can’t control the voices. I really don’t know where to turn. I have tried to find a support group but every time I look it states that the groups are not currently active . She is really having a hard time now with multiple voices (including her friends) that tell her she has a “bug” imbedded in her ear so they can talk to her. I am going to start guardianship proceedings as she is now unable to manage her own. I feel completely alone and not sure where to go. She does take her medicine (which I control and give her) but it just isn’t helping very much. The best years (2) was when she was on Clozaril but she has a seizure disorder and the dose can be problematic if it triggers the seizures. There really is no answer that I can see. I don’t know if I should leave the house with her or stay and be verbally abused by my husband and other daughter.


#49

Look into NAMI , you can call them and get advice . Good luck , I know how hard this is for you and I’m sure nami can help you .


#50

You are going through so much. I hope for the best for you and your daughter and the family unit.

Some of our difficulties do not have resolutions (currently), but it seems we never stop trying. I hope there is some goodness ahead for you and yours.


#51

Yes, it was the same for us after I read that book. I have witnessed many positive changes for our family(although she still won’t medicate and has no insight). Changing our communication to align with what is suggested in this book was a great help.


#52

For mine too, the LEAP methods reopened the lines of communication that had been shut down by me telling my son that everything he was experiencing was not real.


#53

I am sorry you are putting up with verbal abuse from your “sane” family members, while you try to cope with your daughter’s voices. If the medicine isn’t working, perhaps it is time for reevaluation of what she is on. One time, out of 4 hospitalizations, I witnessed almost complete remission of all symptoms with my loved one. It taught me that the right combination will work well, and the wrong combination will perhaps work only partly. (She was on Haldol, an anti-psychotic, and Trileptal, a Parkinsons disease drug for seizures - even though she doesn’t have Parkinsons and the combo worked). She also got a long acting injection during one hospitalization, that made her the girl I used to know, until it wore off.


#54

Hello - what is crisis intervention. Is there a link or post on this website where I can get more information?
Thanks


#55

How sweet and poignant for me because my son has always and still is one of the nicest, most caring people i have ever known. I’ll post our journey story after I read all posts. Just wanted to comment.


#56

I don’t really understand this either. We don’t really have that here in Colorado. I think it’s different by state. Here I could call the cops to come out with to evaluate if my son is not able to care for himself and they could put an M1 hold on him. There is a Crisis Center I could take him to. Which would just take him to the hospital. The only way I got help for my son was to get a emergency mental health hold. He had barricaded himself in my home. They had to break in to get him and off to the hospital he went. He was there for 19 days then went to a transitional house and will come home next week. Keep asking the questions and eventually something will click that will work for you to get (I believe it’s your wife) help. There are hotlines to call as well. Here in CO that # is 844-493-8255. I found them somewhat helpful.


#57

Some communities have police officers that have been trained in crisis intervention - usually for mental health crisis situations. Many are called CIT - crisis intervention teams. In some areas you call a special number to request them to come to your house to help your family member. Sometimes you request them when you call 911.

Our county has one “mental health” officer. We are supposed to request him when we call 911. He is a tremendous help and handled our son with respect and professionalism as long as our crisis occurred Monday through Friday during the daytime.


#58

We have a group the can come with the police. They are called Edge and will help to get a person into the hospital versus jail. I have spoken with them several times and they have not given me good advice unfortunately. At the time I thought they were but in retrospect, my son would have ended up for months in the State Mental Hospital. These aren’t the easiest waters to navigate.


#59

Perhaps a person can simply schedule their crisis ahead of time, so it doesn’t interrupt a lunch break?

Jeez, I’m so sorry you’ve had so few resources in your area. It shouldn’t be that way.


#60

I’m reading that book “Insane Consequences” and getting pretty fed up. The author clearly makes the case that our country spends enough money to solve the problem for all our family members. The problem? The money doesn’t get spent on our family members, it gets spent on “mental health” instead of on those with severe mental illness. Our family members are deemed “too hard”.

Hmmm fed up - I keep thinking about cake heavily frosted for some reason. :birthday: