Fast sliding out of control ... Stress stress stress :(

[ingemlb]

Having a huge vent here. Our stress levels have risen to the intolerable. Husband just walked out saying he is scared he may hit someone if things don’t change so he went for a walk instead. (He was much calmer on return)


Background which I have already posted on Alysia’s stress thread is that our son who suffers from Schizophrenia is having a psychotic episode. Sadly he doesn’t believe it and thinks its all religious persecution and in his paranoia is convinced everyone has ganged up on him and is telling lies about him.


He lives in a supported residence and the start of all this was that several residents complained that he was preaching non stop mainly at night and they were actually getting scared of him. One young staff member (a trainee of 18 who seems to be left in charge on her own in the evening with 25 residents some elderly some mentally ill) rang the owners and alerted them to the fact that things were getting out of control. Our son was told he needed to stop talking religion in the public areas of the residence. They rang me and asked had we noticed a change in him. Every time he becomes psychotic the religious behaviour becomes fanatic and we have experienced it many times that it feels to us like persecution when he pursues you everywhere wanting to get his point across. So many years ago he was told by his psychiatrist he was not to discuss religion with his parents and amazingly he has adhered to that (mostly).


Anyway he flat-out refused to stop preaching at his residence saying it was his right with freedom of speech and freedom of religion and if the residents (his very good friends) would say to him personally face to face we don’t want to hear about religion from you he would not preach to that person. Trouble is they appear to be all too scared to tell him and so he thinks the staff are lying and making it up so he feels the victim here, not the perpetrator. The other complication that appears to have been sussed out by the psychiatrist is he had some kind of attraction towards this 18 yo staff member who accepted many gifts from him giving him the feeling she “liked” him too but when it came out it was not true he felt terribly rejected. So that may well have been the trigger to push him over the edge. Wouldn’t be the first time in his life. Relationship issues have often caused severe nervous breakdowns.


The issue is the Residence called the crisis team who had him assessed by a Psychiatrist who decided he was not “ill enough” to be locked up in a hospital and after much coercion they managed to get us to agree to have him live here for 4 days whilst they treated him in our home.


It has been a very stressed out 4 days and I can feel the stress pushing me over the brink. Not that he was totally in our face all the time. He retreated to our patio most of the time listening to music or watching movies. Any discussions always ended up at the same end road. He flatly refuses to change his attitude and behaviour because he doesn’t believe he is sick. This morning I tried to explain to him (after he asked me) what symptoms we saw in him that could explain why everyone thinks he is sick and he doesn't, and in the end he became aggressive (verbally) and had me in tears so my husband told him to leave the room. I tried to explain it to the Crisis team and they have admitted that he has not improved since being “treated in the home” but are making no move to have him hospitalised.


Anyway fast forward. At lunchtime my husband took him back to the residence and drove off. Within 5 minutes of arrival he pounced on one of his “very good friends” the most timid and gentle person there and demanded to know if he disliked him preaching. This chap was too scared to admit it to his face and the owner came along and saw him shaking in his boots so she told our son its’ either shut up about religion or ship out.


He interpreted that “I have been thrown out of the Residence”. Then had the cheek to borrow 100.00 of chap he had just confronted and jump into a taxi and head off.


His longterm plan is to find a caravan park, hire a tent site for 39.00 a week (which by the way he can’t afford) and live in a tent. Being a hoarder he then has to get rid of an enormous amount of stuff (the only positive so far in this mess). IT’s winter here and within days he would have pneumonia is my view.


Anyway that’s his plan. I was contacted by all and sundry (case manager, residence owner) and sitting here wondering where he had gone when an email arrived asking me to ring his brother to see if he could spend a couple of nights there whilst he found this tent site. His brother had already emailed him after the same request was sent to him last night that this would not be possible and seeing he wanted to be independent he could start learning independent living skills by managing to live out his month’s notice in the residence, keeping the peace whilst he found some alternate accommodation. Well that didn’t work too well.


So I told him no you can’t go to your brothers place. Main issue is he would be too far away from his treatment team, his brother works shift and studies full-time so is hardly home and his brother’s partner suffers also from depression so my older son doesn’t want to put her through all this trauma as well. Which I fully understand.


So all I could say to him is come home. He said “I don’t want to live with you guys” I said nobody asked you to just get here until we can sort out what’s next and you get a chance to see the CAT team.


Now we are waiting for him to come. The CAT team are waiting for me to call them. I have no idea if they will finally agree he needs more help than a couple of extra pills a day. So not sure where to go from here. I am absolutely puzzled that we as parents who have known him since his diagnosis in 1994 and who he lived with until last year and the owners and staff of the residence he lives with all can see he needs help yet the team who are treating him deem him not ill enough to be re-assessed in a hospital. That would be the only environment where thy can observe him 24 hours not just twice a day for a few minutes


Other issue is I am to go down with the Pred today. Waiting on my Rheumy to ring and I want him to agree to let me stay on 30 mg at least another week as I was just starting to feel the benefits when all this started and now I feel like I have been through the wringer. I am also struggling with getting my blood glucose under control. In the last week my insulin has gone up from 10 + 8 to 18 + 16 (take it with lunch and dinner) and as I am being careful with food all I can think its the stress or the illness still grumbling or flaring Some good things are that my sinus issues are improving, my breathing has finally stopped being a loud rattle and the cough is all but gone which I see all as a result of less gunk running down the back of my throat into the lungs.


ok … end of vent.

[annekat]

Good venting, Inge. This sounds like such an intolerable situation and it is unfair that you should be having to deal with it. My heart aches at the thought of him coming back to your place already. I don't know why the guy at the residence had to be so scared of telling him that the preaching bothered him. People aren't helping him by letting him intimidate them, it would seem. And you know him better; as you say, he tends to honor the objections of individuals to his religion talk. And the monitoring team needs to step up to the plate and realize what a negative affect he is having on others, that he needs real help. All I can say is I'm sorry, and I hope it gets resolved soon in a way that not only helps him but saves your peace and sanity.

It's good news that the sinus issues, coughing, and breathing have improved. Good luck with your rheumy about staying on your pred dose, if that's what you feel you need. It seems docs like to start yanking the pred away right when it is helping. I wish I could say more about the blood glucose, but I'm not experienced there. You will be in my thoughts. And keep venting away, whenever you need to.

[ingemlb]

Thanks Anne. My heart would be aching less right now had he come home It's almost midnight. He never arrived here. Four hours after our previous conversation where he said "see you soon" he finally got back onto Skype and asked me to ring around and find him a tent site at a caravan park and book him in. I was fuming and said come here and do it yourself as then you have access to phones. He keeps telling us he wants to be independent yet at the same time keeps asking for help. Then he said he doesn't want to live with us, in supported accommodation or stay in a hospital so all he wanted was put his tent up. I asked him where he was and he refused to tell me. He said he was sick of it all and his last words were "never mind". I reminded him he needed his injection tomorrow but have now not heard a word in over 4 hours.

I rang the Crisis team and now they are springing into action. Told me to get onto the police and report him missing as a danger to himself under the mental health act and that if they were to find him they were to arrest him and take him straight to emergency where he would be locked up. He hasn't slept since night before last so goodness knows what state he is in

Reporting took several hours. We ended up having to drive to the police station to hand in recent photos. He is now reported all over the state as missing and as soon as he is sighted will be arrested. That's if he is found. The CAT team are now worried he is a danger to himself. Wish they had have been a bit more worried when we all had access to him. Goodness knows where he is spending the night.

going back over my conversation with him I could have been a lot more clever and tricked him into letting us pick him up and drive him to a campsite. Then at least I would now know where he is. Or we could have taken him to the ED ourselves. But hindsight is great. I was fuming mad when after we had told him point blank earlier in the week that we would not lift a finger to help him shift into a tent he then turns around and not only wants me to find him a place but also pay for it. Hence my reply .. you have a perfectly comfortable bed here (in fact he has one at the Residence too) and so you can come home where you also have access to the phone and ring around yourself. Well that put him right off and so now we sit here wondering where he is

Oh Anne the people living with Peter at the Residence are either mentally ill, elderly or handicapped. The chap Peter pounced upon was a very timid fragile kind of bloke. Peter told us this morning that he had once before "confessed" to Peter that he had "lied" to the staff and told them he didn't like Peter preaching to him even though he enjoyed it. So Peter kept preaching to him. The staff say that this chap was so scared he would hide himself and lock himself in his room to get away from Pete but was too afraid to tell him to his face. All the residents there are vulnerable and there were others who complained to the staff and yet others who were playing games, egging Peter on but then behind his back complying. He moved out of home April last year. He is 41 years old and this is his first real attempt at living in community with others and he doesn't understand community dynamics. And how people are sometimes scared to tell you things to your face.

When Peter gets full swing with his religious fervour he gets very difficult to handle and get away from. But it has always only been a problem when he is psychotic. So to us it's obvious he needed his drugs re-assessed. The Crisis team only see him briefly and can't form a compete picture of him.

Anyway ... if we manage to track him down and get him some treatment in hospital he may calm down and realise himself he is being silly. Usually he ends up apologising and saying "he made a lot of mistakes". We'll see. Going to try to get some sleep.

[godgirl]

I am SO sorry you have to go through this, Inge! Praying for you, your family and especially your son. I have a friend that's married to a mentally ill man (schizophrenic), so I've heard a lot of what you're dealing with - including reporting him missing to the police, etc. Can't say I know exactly what you're going through, but I'll be praying for you all. Keep venting and keep us up to date with what's happening.

Get some sleep, my friend. Peace.

Jen

[lag713]

I'm so sorry. I can't imagine what you're going through. Remember to take care of yourself. I hope you get some sleep and hear from him soon.

[annekat]

Yes, he is a danger to himself, but to you also. You are not in any shape to deal with this stress, it could make you sicker, easily. They should recognize that. At least now they are out looking for him and will turn him in if found, where he will likely get some help. I'm praying for you all, as well.

[ingemlb]

Thanks Everyone. Your prayers and support are much appreciated. I took a valium and managed to sleep. I keep telling myself not to worry. He is a surviver and quite street wise but still being ill makes him vulnerable. If he doesn't turn up for his injection today he will slide even faster and he will have broken the law being in breach of a Community Treatment Order. So the Police may search a bit harder then also knowing he is getting more and more psychotic.

Anyway I still hope he gets cold and miserable enough to come home for food and warmth and access to a telephone so he can organise somewhere to go to.

It is actually very simple. All he has to agree to is to stop preaching in the public areas of the Supported Residence he is living in and he could have his room back. Only just over a week ago he told us how much he loved the place

I am hoping he logs on to skype today but I have a feeling he will now let me sit and sweat it out to bring me around to helping him set himself up in a tent in a caravan park. He knows eventually I will probably agree with anything.

Well as a mother it's difficult too stop worrying. He is 41 years old and lived with us until last year. But because of his illness he is more of a teenager than an adult so it's difficult to simply say well he is a man and needs to learn from his mistakes. Being mentally ill makes him very vulnerable out there. But he has spent nights in town before. And learnt some basic survival skills. Like going to where there are fast food outlets and people dump their half eaten meals into the bin which he has no aversion to helping himself too, as I found out recently from my brother when our son demonstrated to him how much good food was being chucked out. That gave me nightmares for days thinking our son is living out of the bins. However it was totally ridiculous. He lives in a very fancy accommodation unit where he gets very well fed, he cleans out our fridge and freezer when he comes here and we send him home with money and food bundles so there is absolutely no reason to live out of bins

Then yesterday morning he ran out of cigarettes and asked me for some cash. I didn't have any on me and he said never mind. I never pay for cigarettes any more. Then I discover he goes to the local shopping village and finds all the ashtrays, empties them out and takes the tobacco out of the butts and rolls new cigarette from them. I also found out when he recently visited his brother he emptied his ashtrays too. So ... he won't go hungry or run out of smokes. As disgusting as it sounds at least he knows how to help himself.

I had been wondering how on the limited amount of cash he had available he was able to chain smoke ! Now I know.

He likes to spend the night in the city preaching. So he knows how the homeless survive. He was also given a list of shelters by some nurses he bumped into. I hope he still has the list and finds a bed that way.

Our older son has taken the day off work and will spend it with us to support us. My granddaughter also offered to come by this afternoon. So I we are not lacking in support which is comforting.

Anne I have been telling his treatment team all week how annoyed I am that they had forced us into taking him back home. I told them that I was far too ill to deal with it but it all made no difference to them. They refused to budge and assess him as requiring hospital care. It's unbelievable. I will have to get a lot of research done to know what to do in the future so this doesn't happen again. That's if we are given a chance. My worst fear is our son will simply disappear and not contact us again

[annekat]

Inge, this is all very upsetting. But I think you will be hearing from him again. If he shows up at your door, I know that will be a relief, but will still be problematical if he is continuing to behave the same way. If he is violating treatment orders, I hope the police do pick him up and get him to somewhere he can be treated, evaluated, and helped. It is good of your other son and your granddaughter to come by with their support. I hope this chapter of your lives will work itself out soon so you can get back to focusing on your own health issues and have a chance at some peace of mind.

[ingemlb]

Thanks Anne. He managed to log on to Skype and text me. He spent the night in the city, guess roaming the streets. Unless he found a bed to sleep on that makes 3 nights without sleeping.

Anyway he said "god is looking after me. I am well and happy". His standard reply to any situation. I offered him a lift to get his injection but he refused. Reckons he is going there himself today. I then rang the CAT team (crisis team) and had a mini nervous breakdown on the phone.

Young CAT team member:" Oh ok if you have heard from him then he is no longer missing" (sounded like she wanted to add "and all is well" I told her that they better reassess him and grab hold of him IF he does turn up. Oh well we need to decide that for ourselves. I said how much more proof do you need??? He is driving us all crazy. The Residence doesn't want him the residents he lives with are scared of him. He is full of delusional ideas and making ridiculous decisions. Don't you DARE PUT US through another night like last night because unless you lock him up where ever you put him he will simply run away again and next time not come near you. So she had the cheek to ask me if I was willing to have him back here for further treatment. I broke down then and shouted at her NO.... i AM TOO SICK TO COPE WITH THIS... and handed the phone to my husband to finish the conversation.

The CAT team member I spoke with last night seemed to have it finally sink in that he was a lot more sick than they believed. But every time you speak to this team you can talk to any of 27 people and so each of them reacts differently. I simply can't believe they just want to send him back here !!!

Anyway I have now taken 2 Valium to calm down. Next nervous breakdown I am heading to hospital myself

[annekat]

Thanks for the update, Inge, and I'm glad you at least have some news. I'm glad you really socked it to them about how sick he really is and the effect he is having on you.....