All of the following has been taken from the carer forum following a carer to the lead up and through a crisis:
http://health.groups.yahoo.com/group/Carersforumuk/message/214
Mon Jan 30, 2006
Warning signs
When son was in stage of us knowing something was not right and since he's been on medication, he has moments of 'loosing it'. 5 mins of being out of control followed by calm. throwing loved/valuable items away and damage to property. (I liken it to equivalent of epileptic fit, where there is a flurry of shaking and then it resolves usually into calm sleep.)
For first time in 4/5 years I was pulled to the ground by the hair as he muttered "voices are coming from you.."
Yes, I have mentioned it to psychiatrist.. many times, including recently when he was discharged after a time as a voluntary patient after an incident when my "evil" computer went out the window. He spent more time out with me than in with only 'help' being asked not to come home! He has a flat. The incident with my hair happened a week after being discharged. He again is a voluntary patient and is back in his flat, feeling extremely low as he realizes the worst has happened.
But violence from the one, one cares for (and loves) can be so hard.
http://health.groups.yahoo.com/group/Carersforumuk/message/430
Mon Mar 13, 2006
Carer at Breaking Point
hello whoever is listening, I am at the moment having to get my son moved out, he has been off and on with his medication and life is impossible when he is like this, he is up all night playing his music too loud, his has all the doors and windows open and is hanging out the window laughing insanely. he is obsessive about washing and the washing machine is going all day, he changes his bed everyday including the duvet. he has refused to give me any money for his keep and I have been getting deeper and deeper into debt.
He is hearing voices, especially the neighbours making derogatory comments this is making him very angry. after I broke down recently the team have done a medication watch but he is still hearing voices. they have found him a place in supported housing, he moves tomorrow but he is terrified because other people in the house are bald, he is afraid he is going react badly to this and to them as another of his obsessions is about his hair.
I am heartbroken at having to do this but I am now ill myself, my life is falling apart as I cannot concentrate to manage my own affairs. he is angry and aggressive to me and shows no regard for me or my home. you see sometimes the people we love and care for behave in unlovable ways and we have to make difficult decisions which feel wrong, I am fearful he will screw up in the supported housing and end up in a hostel or worse.
I don't feel I can do any thing about all this madness except to try to get myself well again so I can go on fighting for the best treatment for him and to try to stop him slipping through the net, or worse jumping of the cliffs locally like some I know have done,
http://health.groups.yahoo.com/group/Carersforumuk/message/466
Fri Mar 17, 2006
Carer at Breaking Point
Thanks to you and everyone else for the kind response to my message, my son has moved to his supported housing, and I am trying to get used to the quiet house, he is not happy about it and begged to come home for the w/end. I said no, heartbreaking. he was heading for another trip to hospital had they not done the med. watch. I had to scream and break down first though.
http://health.groups.yahoo.com/group/Carersforumuk/message/878
Sun May 7, 2006
Carer at Breaking Point
Thanks for thinking of me, ***** is still in his supported housing, just, he has played up a lot, I think the outreach team may appreciate some of what I have been dealing with virtually single handed. However he has nothing to do, they have got him signed up for some gardening but it hasn't happened yet!!! What’s new? all he has to do is his obsessive washing and cleaning and when he gets his money gets drunk and stoned, bored out of his mind. sharing a house with two guys in their fifties who watch TV all day long.
If he doesn't start managing his money better the team will apply for appointee ship. I can't tell you the pressure that has been put on me to relinquish this. I used to deposit his income support in his bank, all of it, and keep the dla back for his living expenses. he was always badgering for money so I think he probably had it all eventually. I have picked up a bit but I am not happy about the situation, if he gets thrown out the team say it will be a tent next, they mean it, they did it with my friend's son. I think all the time he was here after his last hospital admission he was never out of psychosis.
http://health.groups.yahoo.com/group/Carersforumuk/message/1219
My son has attacked a young girl
Thu Aug 31, 2006 4:32 pm
I am posting here today the fact that my son was arrested yesterday for getting hold of an 8yr old girl in the street and cutting her hair. In his mind this was a revenge attack as he suffers with delusions that people are cutting his hair, I have got assertive outreach involved and an assessment took place today, the psychiatrist decided he could not detain him, there are no beds for voluntary admission. They have decided to bring in the home treatment team, I have made my views known about my concerns about this uncharacteristic behaviour by my son, I have great fears now about becoming one of the statistics of those mothers who try to get help for their son and he ends up committing a worse offence. I am appalled at what he has done and feel he should have been admitted after all he was a danger to others he said anyone would have done he just wanted someone else to know what it was like. I have chosen not to support the home treatment plan, I recently moved my son out to a bedsit because I can't cope with no support. He is in danger from the people around here where the incident took place the police have warned him to stay away, I am still in shock over all this.
http://health.groups.yahoo.com/group/Carersforumuk/message/1228
Fri Sep 1, 2006 8:07 am
thank you everyone who has replied, the latest is that an hour or so after everyone left the outreach team rang to say there was a bed as he had agreed to go in voluntarily, they obviously shuffled everyone around and sent someone home on leave, I believe my decision not to allow home treatment played a part in this, the risks were too high in his own bedsit with only two visits a day. the solicitor has said he will be charged with abh and that the court will want to detain him, I am anxious in all this to highlight the lack of treatment for dual diagnosis and treatment centres, and funding. I am informed that I can sign him in to be detained in hospital with the co-operation of a doctor, the police are willing to wait for him to come out of hospital to take up the case. I can't speak highly enough of the police who have been understanding and compassionate in this instance.
http://health.groups.yahoo.com/group/Carersforumuk/message/1230
Fri Sep 1, 2006 11:04 am
Thank you, Lucille, for the information you have given me, we have a breathing space for a few days while he is in hospital and I guess I need to make some moves to get him sectioned just to secure his bed, it is an awesome responsibility we carers have. I have been very vocal about the ridiculous situation of him being referred to the transgender clinic and was on the point of changing his name they have actively encouraged this and his cross dressing which has made him a laughing stock locally. as he has struggled to resolve his confusion around his sexuality, I have been concerned over his growing feelings of persecution and paranoia, the mental health services have blamed his cannabis use which he has dramatically cut down on, is he self medicating? tormented day and night by voices calling him bald constant fears that someone has cut his hair, in the street on the bus in the house he has got angrier and angrier I have been fearful for some time. I have been to see the local mp and she requires his permission to look into his case, is this true? I am also taking part in a BBC programme about the local mental health unit due to the high no. of unexplained suicides and I was asked questions about the treatment at this hospital and any concerns I had re specific doctors and their actions so I have put my head well and truly on the block. I have threatened to go to the newspapers we are hoping that as a result of this programme the health commission will take it on as the reporter could only access information in the public sector. the staff at the hospital were warned that they must not talk to the media, this s the unit my son has been admitted to.
http://health.groups.yahoo.com/group/Carersforumuk/message/1246
Charged
Mon Sep 4, 2006
hi everyone, ****** has been charged with assault and will appear in court on Thursday this week, I have written a letter for the solicitor expressing my concerns about ****** treatment and enclosed the letter I had from the local mp following my visit to her in August. I am so relieved I did that. If you look back over my posts you will see I have posted some time ago about my son's referral for a sex change. As all this will be in the local paper and I have been very outspoken in my letter, on the tv programme and on this site I am fearfully stepping onto the frontline. I also have a complaint against our care support service where I receive no support and have had none for two years, this is in the light of my age, 58, the fact I am on my own, I have to take antidepressants myself, I have fybromyalgia. My son has schizophrenia, substance abuse issues, and is cross dressing and attending appointments at Charing Cross Hospital with a view to having a sex change, he has been put on a testosterone blocker already, they now require he changes his name by deed poll and dress 24x7 as a woman. This is a boy with a mental age of about 13, who cannot manage day to day living. I don't know if it is appropriate please forgive me if not but if anyone feels strongly enough to write of their concerns I would be pleased to receive such help. I want as many people as possible to know of this in order that those dealing with my son understand and his care know they are accountable.
http://health.groups.yahoo.com/group/Carersforumuk/message/1409
Tue Oct 3, 2006
In Court
we are in court today, the situation has taken a much more serious turn in that his delusions have become more disturbing. my friend's son has been put in a secure unit in the last week on an attempted murder charge. he had reduced his clozaril by half then stopped it. because of patient confidentiality his mother was not told, not even given a tip to keep an eye on him. he is under the same team as my son, his sister committed suicide 2 yrs ago also under the same team. I have contacted the head of the outreach team for our county and he has promised he is referring our situation to his medical director and from there to the nhs trust for a full investigation into my son's treatment. we are hoping he will not be sent to prison but to a hospital. I am so angry about what has happened to him I risk contempt of court, I tried to get him into specialized treatment like the Richmond fellowship but funding was refused I am interested to know what it will cost to fund now, thanks for being there,
http://health.groups.yahoo.com/group/Carersforumuk/message/1427
Fri Oct 6, 2006
Outcome
****** is now in our local unit on a 72 hr section, a 28 day section will be imposed once they have assessed him there. it was interesting at the court, we sat around waiting for nearly 5 hours while the court cpn, who had thankfully involved the forensic psychiatrist, the solicitor and an approved social worker decided what to do. they went for an adjournment because the reports they had said 'well yes there is a problem' but did not put forward a treatment plan! the forensic pschy. took a lot of info from myself and a friend and took it all very seriously. My son sat quietly during all this behaved impeccably, got agitated when he heard the word 'bed' but amazingly did not kick off. as soon as they sectioned him I got a list of things he wanted, shampoo and conditioner from toni and guy etc. later when I took these thing into hospital he was happily arranging things in neat piles on the floor and off to the laundry room with the clean clothes I had brought in.
I hope they have more than one machine because he keeps the washing machine going all day. I think he is relieved, he knew he was out of control, I am relieved but the battle is far from over. Pressure must be put on the government to change funding policy, and pinned down about what they are going to do about an epidemic of dual diagnosis. in my son's case I got him referred to assertive outreach because I understood that they were for difficult to work with clients, non- compliant and dual diagnosis, yet it seems these are the reasons they have given for not being able to help my son, calling it 'bad behaviour'.
Feeling Scared
I felt scared posting so openly what my son had done, in amongst all the files being uploaded there is not much personal experience such as mine being shared. I see that it has brought some people out, there is also the matter of shame, coming to terms with the fact that these things are happening is hard. In al-anon they say "you didn't cause it, you can't control it and you can't cure it" the value to me is to be heard. We all need to be heard and not driven into the closet of despair, we contribute to the stigma by buying into the shame. My son has an illness the system is not set up to help recover but to prevent him being a menace in the community. He has substance abuse issues, at 23 yrs many have, I have been involved with alcohol and drug recovery for 24 yrs. In that time I have seen many go into treatment 5 or 6 times, that is 6 weeks in primary and up to a year in secondary treatment, during that time they concentrate on their recovery they learn life skills and deal with the harrowing things that have happened to them in their lives. They do not go to college or have to deal with the DSS they are shielded from these things and given the space to get well. I have also seen many transformed from living on the streets, being sectioned, diagnosed with schizophrenia, manic depression etc. to going to college, university getting married becoming useful members of society, many go on to work in the field of counselling. All of this is denied my son, there is no funding, and many treatment centres will not take people with a mental health diagnosis. This is so wrong and against human rights, it is discrimination. Our kids need safe places to go to sort themselves out, not hospitals where they medicate them and don't listen to them then turf them out into the community and expect them to become involved in some of what is on offer in the community which is mostly very unappealing and I don't blame them for not wanting to know.
