Tell us how you are today?


#443

If they think you are supplementing their income through housing - they will reduce their monthly money.


#444

I am sorry you are seeing bad things brewing, really hope things don’t continue to spiral. With the med- is it less so than before the med? Its so hard to keep things stress free, even a happy occasion like a birthday is so stressful. Jeb looks forward to holidays or special occasion just to see the stress of anticipating something make it so he can’t enjoy the day.


#445

Its hard to not know more about Jeb’s life. I hope he does have people in it. Bit sad in his paranoid situation that we family members have to keep our distance, but it does make it possible for him to enjoy his life more. We tell each other when we have contact with him. It feels like we are on the outside looking in and just getting occasional glimpses. At least I got the glimpses when he lived here, now I get “information glimpses”.

I keep reminding myself that I do know what his daily weeks are like, and I do. I guess a mother’s eyes are hungry eyes when it comes to seeing our children.


#446

im not doing good today, my mom hasnt been delusional for about a year now but im still paranoid that she will get back into her old habits and go off the medication. i also feel like i have nobody to talk to even though i have a few people i know i can talk to but i feel like im always complaining about it and dont want to bother them. its just been a hard day nothing particular happened though. i have two more years then i can move out.


#447

Yes Hope. There are many things that are a million times better since meds. The anger is gone. The long periods of isolation are gone. The long periods of ranting are gone. We can usually spend time with our son and not feel like we are completely walking on egg shells. The progress is huge, as compared to before the meds.

Granted, we’ve all learned to ignore a lot of things, or just remove ourselves when he starts to “pick a fight”, accuses us of things, or just talks nonsense, so there are other variables besides meds that are contributing to a more peaceful existence. But, the mood stabilizing effect of the meds is what allows him to be more even keeled, and allows him to participate as part of our family.

The reason things look like they’re spiraling down is because a lot of the old (and some new ones too) delusions are coming back, and it looks like some auditory hallucinations are back in a bigger than usual way too. The paranoia never really went away.

Yesterday, my son actually suggested he might want to go to the hospital soon “for a few days”, but I know they’ll want to keep him longer once they get him in there. We’ve been bringing up the idea of starting Clozapine but he’s still not biting. I assume it’s still because of his pill-eating paranoia. I’m pretty sure his insight into his illness is teetering.

It’s just a matter of time before he decides he can’t stand the way he feels anymore and asks to go to the ER. It’s such a shitty f’n way for a young person to exist, but we’re very fortunate that we have a local hospital that he’s a regular at now.

Everyone has said that the “miracle drug” is Clozaril, I just have to wonder and hope that our son will someday get his chance on it, and he’ll get a shot at a more normal life.


#448

In the real world rents are high! My son is stressing about how his lot rent goes up $20 each year and figures in five years he will need to move. Sure there is the alternative of subsidized apartment but then there are neighbors he has to walk past to get into his apartment. And we all know how that can go. :roll_eyes:


#449

So sorry to hear your son is not doing well. It is awful to deal with this disease on an everyday basis. My son is not doing that well either He isolates and I don t see much improvement in his paranoia. It is so frustrating and sad to see. Hope both our son’s had “good” days tomorrow.


#450

Totally love that you can see all the positives - totally hate the frustration you are feeling. I want to write despair, but maybe that’s more me.

Your son is so young, you have had such progress.

People do sing the praises of Clozaril.


#451

You would think if my son is willing to go with less in order to live in safer area, the bureaucrats would leave it alone.


#452

She saw the dad, mom and her friend (the daughter) daily for lunch and dinner (the dad cooks and takes her to the grocery store) and the mom and daughter help her to work, and do social things like walks, playing catch, horseback-riding. They got her to curb her night-time yelling, hold productive side jobs, and eat and take vitamins regularly. I was not successful at accomplishing those things with her. She is talking more (although it is usually about her psychotic delusions) although she slowly became more and more antagonistic and paranoid to the dad (who is her father’s old time friend, (her father is dead). It was working well… for a time.

This psychotic break is over, apparently yesterday she was calm and back to “normal”. However, they want her to come home, and she doesn’t want to leave, which caused another anger outburst. It is a problem right now.

When she left in April, she flew to CA on a direct flight, got in at midnight, went on a shuttle to a hotel, stayed overnight and was picked up by them the next AM and taken to their property. I prepared her for a few weeks with exact written instructions (itinerary and hotel shuttle number). She seems able to control herself in public when she wants to. This was her second trip on a plane this year and her second time in a hotel alone. She also had a bus trip this year from NY.

Yes, I did enjoy my time off. It was a welcome break from the higher stress levels I’m used to when she cycles through her mental issues with good days followed by bad days and her constant talking to her voices.

I am embarrassed to say that I am resentful that she ruined the best opportunity I have found for her in 2 years. And worried about how they are going to be able to get her to agree to leave and come home without a fit.

I consider that this was actually a good life event for her, she improved quite a bit in social skills (wry smile) in my view. The problem is the 20 or so staff that work on the property also, and her paranoia growing with the dad and the staff.

I do keep a journal about her, so I have a record of good/bad times. That is something I learned from NAMI and has been ultra helpful.


#453

I have a tenant whose mom had schizophrenia as he was growing up. So, I understand from his stories how hard it can be for you even when your mom is having better times. I was very happy to find this site and to feel I have people to talk to. Some folks at my workplace ask about my daughter but I too feel they really don’t want to know. It is hard for me emotionally to get by some days, even on a “quiet” day. I hope you can do some things to make yourself feel better. Do you have any hobbies? Do you make sure you sleep and eat well and perhaps take vitamins? Those make better days for me. Hugs.


#454

Thank you. I know that you understand, as do all caregivers on here. I hope we all have good days today.

I hope your son’s birthday goes well, and that the med effectiveness gets sorted out. May there be more peace for you all. I love the peaceful days.


#455

Hate those declining periods when you know the bottom is starting to fall out, and that it is just a matter of time until another hospitalization.

Clozapine has definitely helped my son, but it isn’t a miracle drug either. My son still has his delusions, still has paranoia, and still rants frequently in response to internal stimuli - but for a much shorter time.


#456

Thank you for sharing that Vallpen. It helps me maintain some perspective and not pine so much for something we don’t have.

If my son does get on Clozapine at some point, I wouldn’t be surprised if we end up with the same result we have with Invega. There’s a very good chance this is as good as it gets.


#457

The up-side is that he has not gotten to the point of requiring hospitalization for a couple of years now, and is stable enough that I could take a vacation this year.

I still bring my phone and keys in with me when I go to his house, but no longer feel tense and afraid about going in, and don’t feel I’m bringing them in to have them close in case of emergency.


#458

Well we’ve had a slight turn of events. Last night at 9 my son says “see ya”. I’m like “ok, where are you going” He says work. Apparently, he go himself a job stocking shelves at a local grocery store. All the power to him! I hope it works out. He got in this morning. This could work as it’s less time around people and pretty straight forward. In the last years he’s been more of a person who stays up all night. Day one - so we shall see!


#459

@dianeR. Wonderful news. All we have is today. He was motivated to seek employment, which is fantastic!


#460

@DianeR,
That’s really great! Do you know what store he works at? It sounds like a good turnaround compared to where you were last month!
Alway good to hear a happy story! Take care AnnieNorCal


#461

Irene I felt the same .I isolated too my son too .I so tired ,I have depression also I cry every day.this is more painful I had to live .I felt impotent .and my son depend all on me too


#462

I always have my keys and phone with me when I visit my son, even tho I am not afraid of him now as he is medicated, but I never forget when he was psychotic, before his first hospitilization ,when I was so afraid and slept with my bedroom door bolted shut and with a jacket on with keys and phone zipped in pocket. There were many times I was too afraid to stay in the same house as him and had to stay with friends. I am glad this horrible of period of full blown psychos only lasted about 4 months before he was in the hospital. It is hard to forget this, so I usually am somewhat cautious.