Tell us how you are today?


#805

Yes, that’s true isn’t it? Thanks for reminding me.

Today, my daughter opened her door for 30 seconds to take her dinner from me. Usually now she takes her dinner, but often there is no smile. Tonight she smiled at me. She has a beautiful smile. That was a real moment of pleasure for me.


#806

I’m up most nights too and my brain doesn’t stop thinking about my son, i tried some homeopathic pills to help me through the night and it actually helps .


#807

Why do I let it get to me? My son is currently on a kick where he thinks he needs 8 eggs for dinner. I just can’t justify that. I had to listen to accusations that I am a ‘negligent parent’. This while I am fixing a dinner for a 28 yr old. Then he went on to past evils I have done, such as 10 years ago yelling at him over the phone because he wouldn’t finish his final high school credit - in PE.


#808

Is it possible to let him have the 8 eggs? I would think after a while he would get utterly sick of them. I’m sorry that he went on about the evils - my son told me for years that I had been a terrible parent. The list was unlimited. I couldn’t understand it as I was a single parent and had put him first. Then we found out why he was doing that.


#809

Oh boy can I relate. My son was so influenced by a club he was in who told him that his parents were trying to kill him by the food we were giving to him. He took this literally and his delusions associated with food are just so out there. I won’t even go into some of the food rituals he’s established. When I say them out loud it makes me so sad.

My son can get very moody when he doesn’t get his way. Setting boundaries is such a struggle right now.


#810

Hey all, how am I doing?
Well, I just want to be numb, so no feeling can penitrate my skin.
I’m going through many stages of unresolved grief. Each step is its own grief. Ther was a young man at the grocery store, he was attending the register as we checked out our groceries. It just makes me very sad, why can’t my son be that young man? I’m not asking for much, just sad my son will never have a normal life.
Having some hard times, life is not fair!


#811

I just want my son to be the young man at the register checking out the groceries too. I can’t even believe I’m saying that. He was supposed to achieve such great things. This wasn’t supposed to happen to our children.


#812

I feel exactly the same way @AnnieNorCal and @Day-by-Day

I got my daughter to go with me to WalMart to buy food recently (I swear she is barely eating except for the dinner I make for her daily, and @Vallpen I make what she wants to eat just to get her to eat). While there, she just GLARED at the check out woman, scaring her by the way she looked and commented. Good for the young check-out woman, she didn’t say or do anything to engage my daughter.

I thought the exact same thought “why isn’t my daughter like that young girl?”

It is hard for me not to cry when things are in my face like that.


#813

There is a lot of heartbreak and struggle surrounding Sz and SzA.
In the Wreklus household, we remain optimistic for my brother’s work to manage his disorder.
But, I read stories from the forum for DX’d people and from here and I see the kind of fear and heartache I felt for a long time. Things I worry about feeling again in the future.
Today was another good day. I’m amazed by my brother’s strength and resolve. We spent time with family together and I got to enjoy his unbridled, true personality. Wacky and funny and thoughtful all at the same time.
I realize that there is much that he keeps carefully contained. His ability to participate in evening outtings dictated mostly by his own will power and management of subtle negative symptoms (ones which are hard to observe).
Truely grateful, nonetheless. I choose to encourage his unfiltered honesty about how he feels and what he wants, as I do with all those close to me. When he hints that he may want to call it a night and retire to his apartment for some videogames and his evening routine, I am mindful not to guilt him about it.
But I feel like I might be fawning over him too frequently. He certainly doesn’t need a second mother: “Are you okay? Do you need anything? How are you feeling?”
I’m sure I am guilty of causing anxiety in some ways, especially that one.
I recognize the need to transition my role as a brother again. This time, to become more of a simply dependable guy, rather than a shoulder to lean on.
As with all things, I will do my best and plan to make the change a long-term endeavor full of many small milestones.

At least, he knows he has my approval, my trust and my admiration. He may no longer dream of being a rockstar (neither do I dream of it for myself), but he does see potential for a positive and fulfilling future.
His view of the future is the keystone now. It is the measuring stick by which his treatment plan can now be sized against.
I look forward to finding out what the next unit of measure will be. Ups and downs between where we stand now, I’m sure. But there is much to be grateful for.


#814

I am so glad you had a good day with your brother! :man_dancing::hearts:


#815

@Day-by-Day and all
I guess we can all relate to wanting our loved ones to have a normal life. The young men and women we have lost to this illness is (loss of words).
The young guy at the register was so nice, it made me miss my son. Take care AnnieNorCal


#816

Our visit yesterday with son at the personal care home where he is for now was a happy sort of sad. He is so terribly mixed up most of the time, but we got him to kick around his new soccer ball for a few minutes and I can see he still has that amazing “touch”. The “Formal Thought Disorder” has wreaked havoc on his ability to communicate verbally. His frustrations are growing and at one point when I had left his room and my husband told him that he loved him, son sobbed on my husband’s shoulder. I have seen a glistening of tears in his eyes before but never this. In spite of this, we had quite a few moments of laughter. We Facetimed (planned) for the first time with one of his old roommates for about 5 minutes and son later said “He is a really great guy,” He even engaged in creating objects with the foam building blocks (child toys) I had recently bought him. A few of his sentences were clearly and completely spoken and actually made sense. He asked “Why can’t I just come home?” but he can’t because he requires 24/7 monitoring right now. He went missing recently but fortunately was quickly located in this small community where police know the home. And this place requires and can get him to take meds. He started Clozapine a week ago. In an odd sort of way I enjoyed our time with him. We are prepared for a long journey but have a glimpse of hope. Our son is still “in” there.


#817

Willpower isn’t everything.

I was talking to my girlfriend today about exercise and found myself thinking (internally, not saying out loud) how similar her struggle with establishing an exercise routine is to my brother’s struggle to change his own lifestyle to better manage his issues.
Such a common theme for humans in general.

We know what is hurting us.
We know what reasonable solutions exist.
But part of our mind convinces us that those reasonable solutions are unreasonable some how.
SzA - medication and therapy, rehabilitation and routine. But often convince themselves that those solutions are unreasonable.
Body image - exercise and diet, making the gym a priority and everything else secondary until that’s done for the day. But also often convince themselves that this is unreasonable, too.

As for myself, I’m almost certain I am doing the same to hold myself back from my goals. I’m not sure how, because it isn’t right there in my face every day. But there’s probably one or two things I have convinced myself I can’t achieve because I won’t make the lifestyle change.

I don’t think it’s about willpower. In my SzA brother, I see tons of examples of extraordinary willpower all the time. Same for my girlfriend. I think the average person has heaps of willpower to do what they know must be done, especially when the risks are very immediate.

I think the hard part is making the long-term lifestyle change. It’s stressful, for some irrational reason.
The “yeah, but” and the “If only” gets in the way immediately as if by reflex.

I think I can identify better with my SzA brother having this thought which just occurred to me today. It’s not unique to those with a disorder, it’s just more apparent.
We all struggle with accepting the reasonable solutions to our struggles sometimes.
Identifying when this is happening and intentionally steering that train of thought in a better direction is difficult.

That’s not exclusive to Sz or SzA at all.

So the next time I am tempted to give advice like, “Tap into all of your willpower.” Maybe I am oversimplifying the issue and it’s level of difficulty.
It’s not willpower. It could be a host of other things combined:
Distraction, priorities, self-defeatism, unwillingness to give things -another- try after percived failure… Millions of complicating factors.
“Yeah, but” or “If only” type retorts to reasonable solutions are a symptom of more subtle, complex problems that are only overcome by changes in lifestyle and perspective on life in general.
Easy to say, hard to achieve.

Today, I am seeking better insight into human nature regarding… For lack of a simpler phrase, “Do the damn thing.”
Hoping that insight into that which holds us back helps me to better understand some of the hurdles my brother faces in achieving his own goals. And maybe helping myself in the process, too.

Tomorrow is labor day. No work for me, and no group therapy for my brother. I think I’ll ask him what he thinks about the concept of, “It’s not about willpower.”


#818

@hopeforus. Yes. Our children are still there. Just differently. I am glad you had a good visit.

My daughter used to say she had a thought disorder. Now, she says she is injured. I am grestful she is me today. There was a time we did not know where she was. Having a child missing, especially a daughter, is haunting. I have learned to love the person my daughter is today, am accept her as she is. She is stable, and trusts me today. That means so much.

Schizophrenia takes so much from our family member, and families, but I refuse to let it take over.


#819

There is an actual type of SZ called Formal Thought Disorder (FTD), although ALL types are sometimes referred to as thought disorders. FTD has 18 or 19 specific ways in which it is manifested. If you want to know more: https://www.hopkinsguides.com/hopkins/view/Johns_Hopkins_Psychiatry_Guide/787025/all/Thought_Disorder


#820

That is a brilliant way of thinking about willpower and sz symptoms. I’m going to give this some serious thought (dealing with my own exercise and health stuff).


#821

CBT (Cognitive Behavioral Therapy) can be a valuable tool to help someone with SMI as well as to help people like you and me overcome our own issues. However, be reminded that 50% of persons with SZ have anosognosia, which means that they lack the ability, completely or in part, to see themselves as sick. It is not something they talk themselves in to. For those of us who have a loved one with anosognosia (lack of insight), it is doubtful we will ever make progress in our communications until we recognize that for what it is and figure out how to talk the person in ways that validate his/her thoughts as being real to the person (even if we know they are not real/true), gain trust, and then find common ground to get the person to do what WE want for reasons that HE/SHE wants because we believe that is best for the person. We won’t know until we try.


#822

Past experience has been that he doesn’t get sick of these things. He goes on food jags, for months at a time. I left it at - if you feel you need more eggs, you can boil some for yourself.


#823

I have also had the same thoughts - sad that my son is in the 50% with no insight, and seemingly unable to pursue many activities that could make his life more fulfilling.


#824

I would support my son’s participation in any number of activities that could give him a greater sense of purpose and fulfillment, but at this point, he seems unable to do much. His standard answer if he isn’t successful or won’t try is - ‘its because of mind control’. How does one combat such ‘reasoning’ - if it can be called that.