Your son worked 4 days in a row - that is huge. I am glad you are helping him with gas money, they do need these little supports that we are able to provide. It did work for my son when I stopped trying to prove he was sick. Some of us just get to do what we get to do and we try to live with that reality. Its not easy is it?
Not easy at all. Day at a time. The hardest part now is he is staying with my mom and my husband (we are separated) and they rent together and have allowed him to stay temp. at their place when he was removed from my home by probation due to his irrational and aggressive behavior that was scary. He is so difficult to be around and contributes 0. They love him too but want him to move on somewhere else but he has no family or friends. I unofficially adopted him about 6 years ago when he had nowhere to go. The guilt of making him leave is overwhelming as I don’t want that to be the ultimate thing that pushes him over as he would essentially be homeless because he uses no resources that have been provided for him. I hope he keeps the job as that at least allows him to focus on something other then his delusions most of the day. He is smart, funny and caring when he is well, has a lot of potential if he could realize how sick he is. I tell him I am proud and that I love him as often as I can.
Thank you for sharing this with us!
You might contact the VA Programs Director. Do they involve family in their programs? You, and your mom and/or husband, can identify boundaries for him as a requirement for living with you/them, especially those that involve safety for you and your family. When those boundaries are broken, there are consequences, and it will not be your fault if he makes decisions that violate those those boundaries. If you are ever concerned about your or his safety, you should contact the local crisis intervention team. If faced with alternatives that are less attractive, sometimes a person with this illness will be more cooperative with taking meds, for example. Don’t forget to read up on communication skills to use with a person who is not able to recognize that he has an illness. I am a huge advocate of trying this. Read more about this internationally acclaimed methodology at LEAPInstitute.org.
Thank you for that. Unfortunately he is not a Veteran. My friend who is the Director was only reaching out to help to try and get him employed. He refuses to take medication as he does not feel he has a problem and insists what he is saying is absolute truth. I will most certainly read up on what you suggested. Thank you.
As of this am. apparently he has not gone to work at his new job, claiming his stomach is messed up and repeats that everybody is watching him and there is a bug planted in his ear! Our family is exhausted and feel the huge guilt of telling him he can no longer stay where he is due to his erratic behavior which will also make him homeless, but he clearly does not understand that and claims he is being abandoned once again. It is a no win situation and so frustrated that the system does not do more. Tired of hearing he is an adult and has to make that decision for himself when he is clearly not capable of that.!!
its so hard to know what is the next step in this business that will actually help
Yes, @hope for sure, it is hard to know what the right next step is.
My unmedicated daughter seems to be in a better place recently, perhaps because I am not pushing her much any more. Our new normal is working, there have been no major upsets in public, and she is learning to contain her constant talking out loud to her voices when outside of her room. Our last trip to WalMart was simply a quiet shopping trip like any mother/daughter. I try to stick to the same daily routine and the same daily conversations as that works best.
Thanks so much for sharing. My son is 15 years probably more into the illness and has said the same about quality of life on meds. As his mom, yes I would have liked him to find the med that would give him his life back but have come to appreciate him the way he is…most of the time. We still have bad times, but he too has found CBT to be very helpful. I think it was the thing that enabled him to take ownership of his illness and his life.
I hope for you continued success on your unplanned journey.
When a new normal is working, we just want it to last don’t we?
I am almost afraid to rock the boat by changing anything @hope
Tonight was the same as last night, knock on the door, ask if what I am planning to make for dinner is OK, get her approval, cook, pass it to her at her door, let her eat, come back and knock on the door to ask if she wants to walk the dogs with me, walk together, wait to see if she says anything to me, come home again with the dogs, tell her I love her, smile and say goodnight.
Tonight while on the walk she actually told me to look at the clouds and the moon and then told me a few sentences about the beauty and how when she was a kid she used to watch the moon change positions. It was the most she’s said to me recently.
I sure wish she would spend more time with me, of course, but our nightly 15 minutes is part of the new normal. I will never understand how she doesn’t notice that it is strange to spend pretty much 23.75 hours of each day in her room or to keep doing the same things every day…
Old lady blue, maybe it’s those low expectations, that regular routine, and that daily extension of the “olive branch” that’s helping things stay peaceful. Those are the things that seem to be the recipe for us as well. It’s not always reliable, as this illness seems to be cyclical and unpredictable, but it seems to make things bearable the majority of the time.
Thanks @Day-by-Day. I was feeling a bit guilty for lowering my expectations to a 15 minute a day routine. But our house is certainly more peaceful lately. Low expectations, regular routine and a daily “olive branch” is a perfect description; and for sure is a recipe to make things more bearable.
My friend with all the experience says we all don’t have enough patience and always expect too much too soon.
Wanted to share my brother’s thoughts on his anxiety. My son suffers from anxiety - hard to have paranoia based scz and not be anxious, so I found my brother’s perspective interesting.
He said that his anxiety just rings throughout his body without him being able to control it. The meds do take the edge off, but since he has some dual diagnosis issues from self medicating - they don’t give him much for his anxiety.
He said his anxiety makes him feel like he is swimming in a pond with alligators. He knows he is not, but his body has physical anxiety as though he is, and its uncontrollable.
Made me think about my son’s anxiety. On some days he is a wreck due to anxiety. Its like his pond has a variable number of alligators. Some days there are less and other days we can see they are about to add more alligators to his pond.
We are asking them to live lives around these issues. Hats off to them for each day they make it.
My mom who has Alzheimer dementia lives with me and she too spends the day mostly in her room. She is “organizing” her place. ( She makes a huge mess). Perhaps in schizophrenia however, the time we don’t see them doing much they are very much organizing their thoughts and interactions. My son has at times told me things which happened months ago need to be “recycled” and determined what really was going on. So if this is the case, she is very busy indeed. Just a thought.
@hope That’s really interesting. That is a real good way to explain it to someone. No thank you! Yikes!
@DianeR My brother was recently diagnosed with bipolar and does not have anosognosia. He contacts me occasionally looking to discuss his experience. He was so surprised that he was diagnosed with bipolar. As I have mentioned recently in another thread, my family really thought these typical family behaviors were normal. They are all clueless about how to support him in his struggle.
My friend with all the FtF experience said Peer to Peer would be helpful for him, but I shouldn’t try to press the others into Family to Family. The only sibling who would probably be willing to go is my sister with undiagnosed bipolar. My friend says it throws the whole FtF class off when you have undiagnosed folks participating in the family side. Maybe I should suggest that she join him at Peer to Peer just to keep him company.
This has really thrown my family for a loop. Especially since the newly diagnosed brother is wanting to talk about it with everyone. He wants it out in the open. Used to be I was the only one pointing out the elephants in the room.
I like his alligator analogy - made me realize that our family members suffer more than we can understand.
Yes, I can see that that would be true. When I did the class, the family side had one family (an older couple caring for their son) where the father had his own form of dementia, probably Alzheimer’s. It did throw the class off.
Today is one of the bad days. My daughter spent all night awake talking loudly to her “friends” making me lose most of the night’s sleep. This AM she left the house for a walk, but got the police called on her two hours later about 2 miles away, because she was screaming at the building where she used to work (but got fired after her illness started 2.5 years ago). I got a call from the police and thankfully they didn’t Baker Act her (she is NOT dangerous to self or others) as that takes a long time for her to recover from and makes life hell at home afterwards for me. Of the four police, two were negative to me (why isn’t she on meds? as if it is my fault that she isn’t), one was engaging her in a conversation that had no beginning and no end and seemed entertained by her (she was just talking a mile a minute about weird things), and one (who called me earlier) knew her from earlier contact, and was waiting patiently for her to decide to get in the car with me…
@oldladyblue . . . I’m sorry you and your daughter are having a bad day. I think I’d have gotten snippy with the two officers who expected you to keep her medicated, though I suppose 2 out of 4 good ones is better than none.
Seems like it gets harder to sleep through the night as we age; I never am able to anymore. A few things I’m doing that seem to help me get back to sleep: taking B-12 and magnesium in the evening, having a cup of decaf coffee w/milk (w/choc milk is my favorite) or just warm milk. And lately I’ve been playing some of the 432Hz videos that are on YouTube. A few are 8 hours long so you can have them play all night, if you want. The binaural beats require earbuds supposedly, but even without, the sounds are nice and relaxing.
Hope tomorrow’s a better day for you.