Hi all!
I’m Wreklus.
My brother was diagnosed with SzA around the beginning of 2015.
He is currently doing relatively well, regular pdoc visits, taking medication and dealing with changes to it, going to outpatient group at his own request. There is much to be grateful for, and much to be proud of him for.
He still has SzA, and certainly struggles with some very convincing delusions. Some are persistent, like believing that hallucinations are a form of communication, or that he can visit other dimensions. The degree to which he believes these things varies day to day, but they seem to be there all the time.
Other delusions come and go, and once they have passed, seem be just as confusing for him looking back. He can’t understand why he would believe a past delusion, but he remembers believing it very emphatically.
I find myself realizing that I don’t want to search for signs of hope. That his emotional and mental stability can change pretty quickly, and that’s not my fault or even his own fault. Equally, I don’t want to push my agenda on him. I might mean well, but the implied pressure (especially from family) can be misinterpreted as disapproval or even ill intentions.
This leaves me being a strange combination of secondary, yet primary resource to him.
Secondary in that I no longer fund his daily needs. We still hang out and I’ll buy dinner or whatever.
Primary in that he chooses to talk to me about his symptoms and his experiences regularly. It seems like I’m most valuable to him as a “reality check” when his delusions are not 100% convincing, but he believes them anyway. We talk about the things that he takes very seriously, things that he is certain would cause anyone else to “freak out”.
I am so glad that your brother has you to confide in and help with reality checks. And, it is encouraging that he seems to be doing fairly well. It is a constant up and down with sza and I have learned to just accept what happens on a day to day basis. I have not given up hope that better days are in the future. I don’t think I ever will.
It sounds like you have a very important role in his life. It’s certainly not an easy role, but it gives him some quality of life. You’re very kind to do this.
I imagine you already know this, but Schizoaffective moods come in waves. Never feel guilty if you have to step away for a break. I do, and I’m his mother. Sometimes it just gets to be too much.
Thanks!
For sure, we should always be ready for positive change. I would hope that my family would never give up on me, I definitely know that my brother would especially hold onto hope for me if I were in a bad situation.
It can become exhausting, though. I discovered that when I stopped evaluating every little action, every word, or every gesture, I began regaining my own sense of inner peace and security.
Being prepared to take action when a family member in need asks you to is one thing, crowding, fawning and being over-bearing is another.
I was guilty of being demanding and over-bearing at one point, while he was living with me, right before my Mom and I started working on moving him into his own apartment. It was a gamble, but it seems like having his own space has actually helped. Certainly helped me a ton.
Short version:
You can choose to step off their roller coaster without completely abandoning them. They might even be grateful for the extra space to be their own weird self.
If I could arrange that kind of life for my daughter, I would be happy to see her living her weird life on her own. It would worry me, I would wish for better, but her having her weird life on her own IS the way life is supposed to be. However, the laws where I live may leave her living with me forever whether I want it that way or not, as even if/when I get guardianship and so she received state help, it will never likely be enough for independent living.
Thank you for your post. I feel happy that your brother is living on his own, and that you can have your life back, as he gets on with his to the best of his ability.
Thanks for the kind words.
I’m not sure how laws work in other countries, but in the US: As long as a person isn’t an immediate threat to themself or anyone else, they have the right to live wherever they like. I can’t imagine it being different.
It’s not all smooth sailing, for him or for our family. But, he is able to cope with his symptoms well enough.
More good stuff:
He continues to talk with me about the details of his day freely, and is looking into getting hypnotism / guided meditation for anxiety management along with traditional therapy.
We are beginning to realize that SzA might be the most aparent struggle, but he is probably dealing with equally difficult things like anxiety, stress, and probably PTSD. We are starting to look at his treatment in the same way I look at troubleshooting in my own career.
Be honest about what issues occur, how often, and what the impact on daily life is.
Triage each issue and set priorities.
Plan options for addressing each issue.
Implement the plan.
Observe the impact the plan has on ongoing life.
It’s helpful to break things out into logical chunks and adds a level of accomplishment for progressing through the proccess (which is constantly revolving daily).
All of it hinges on the DX’d desire to participate and honestly try. If they choose not to, or stop trying, all you can do is say, “Okay, buddy. I’ll be ready when you want to start trying again.”
Yes, I am in the US too. Each state and county have their own laws regarding gov’t assistance, some are friendlier to mental illness than others. In my county, you are free to be psychotic unless you are literally dangerous to self or others. There are thousands of homeless in this county, but a person can’t get into a homeless shelter unless he/she is compliant with all the rules, which the mentally ill are usually not capable of. So most unemployed homeless who are psychotic wander the streets or the woods in this county, talking to their invisible friends. If I didn’t take in my adult daughter, and pay for her living expenses, that is where she would be.
That your brother communicates and is able to exist independently, makes me smile. I hope he can learn to live as well as he can with his illness(es). He is lucky to have a family to support him, and you are lucky that he still has his independent drive.
Did he easily agree to go on medicine when he first became ill? That has been my struggle: her unwillingness to seek help.
He becomes suspicious of his meds and doc occasionally. For the most part, he realizes that he has a disorder, even if part of him wants to believe he doesn’t.
There is a dynamic of a nihilist perspective sometimes,
“What does it matter?”
“I don’t care. I’ll sleep in the woods, I’ve done it before.”
I try to remind him that he can and should have a safe, clean home. And that I want him to have that because he deserves it. I remind him that it starts with hygiene and routine maintenance.
Of course, it’s still up to him.
You are totally right that if the DX’d refuses to do basic hygiene tasks and wants to live in the woods like a crazy person, there’s really no helping them. But, the big point for him that I think he is a great person, and he deserves to be comfortable, safe and clean.
If there is any justice in the world, he deserves it and I deserve to have a brother who lives well and gets to enjoy positive, meaningful family time with me.
For your daughter, it seems like things might be different / harder. It makes things harder on you, too. Unfortunately, there is no one answer that helps universally. If there were, Sz wouldn’t be a big deal, I guess.
You are so right, there is no one answer that helps universally. Well put. Each caregiver must trust themselves to make the right choices and hope for the best result.