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Not sure what to do (psychosis) - Carers UK Forum

Not sure what to do (psychosis)

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Hi all, I look after my mother who has psychosis. She has been in hospital quite a few times now and had a long stay in a mental hospital around 15 years ago.

She has delusions which are very common now. But I am getting really confused with her as some of the things she talks about I am not sure are delusions any more. It is hard to talk to her about them as she is always being told by doctors and mental health that these things are not real... But what is some of them are?

She always thinks that she has something wrong with her. Some of these things I know 100% are not real... but some things I think could be.

A few years back she could hear things like a buzzing and she had a pain. She told the doctors and they said it was part of her psychosis. She would tell me all the time about it and about how the doctors do not believe her... Me, I believed the doctors. Now, years later after me talking to her old CPN and the doctor about how she is upset that no one believes her I made them look into it. It turns out that she had 2 holes in her ear drum and it was all true.

I feel really bad about this. I feel that I caused her pain and that I may have missed other things because of this. I feel I have been complacent in looking after her.

But on to now. I am so upset and stressed about her CPN (Or whatever they are called now) that I am not sure what I would say to her if I could talk to her now.

About a year ago my mother would not go out. She would not open letters or talk on the phone. She was told by her CPN that she should use this service that would get someone to take her out for a coffee and a chat. They would help her and talk about her and her issues. My mum said yes after us all telling her its a good idea. The lady seemed nice... They got along.
My mum trusted her and talked about herself and her past. She talked about about some personal things and the lady reported some of the things that were taken out of context to some officials. These things were reported to family members and caused BIG BIG problems for her and us.
After my mum found out my mother would not get out of bed for 2 weeks. She would not talk to anyone. She only got up to use the bathroom and to drink (Not eat).
Since then she has not been outside. She distrusts everyone. She wont go to the doctors and only sees her CPN because she is scared of them.She does not use phones and takes a long time to build up to opening letters.

Her CPN is meant to come every week... She books these days and then does not show up. No phone call, nothing. When she comes she stays for 15-30mins and after her visit my mum is upset and even worse. Today she was crying because she thinks her CPN is trying to get information on her (Which I agree with) about how they can stop her grandkids coming to see her. She is extremely scared about this. The CPN did not really talk to my mum about her issues and just asked questions which my mum then refused to answer.

She told my sister that she thinks they want her to kill herself as they do nothing but make her worse. She has taken overdoses to punish herself many times. She cuts herself and does many other things.

Sorry this is so long. I have missed many things... I am so stressed and upset myself that I think I am going mad. It is 3am and I have been up with her all night.

Years ago her CPNs were great. Now it seems that they cause my mother so many problems that she would be much better off without them! I see no use in them at all.

I will post another topic on one other BIG problem that I am lost with. I hope I posted this in the correct place. If not, please move it.
Hi Conrad and welcome Image
Im sorry but I don't have any experience of caring for somebody with mental health problems, but I didn't want to read and run without saying ''hello''.
There will be others along shortly to welcome you too. Hopefully, they will be of more use than me.
Take care,
Hello Conrad and welcome to the forum.

Like India I don't have any experience of caring for someone with mental health issues, so I'm about as much use as a chocolate teapot Image But I've moved your post to new members where more people are likely to see it and respond with some constructive advice.
Hi Conrad and welcome.
It's difficult to know sometimes what is related to the illness and what isn't, so don't feel bad that you believed the doctors, though I'm appalled they didn't even check to see if it was something else Image
My mum trusted her and talked about herself and her past. She talked about about some personal things and the lady reported some of the things that were taken out of context to some officials. These things were reported to family members and caused BIG BIG problems for her and us.
That is a breach of confidentiality and I would complain.
hi Conrad,
welcome to the forum. Sounds to me like you are doing an amazing job supporting your mum. It can be so stressful dealing with all the 'experts' especially when they don't do their jobs properly.
If the CPN is failing to turn up, not staying long, upsetting your mum - could you ask to speak to someone senior or make an official complaint?
Does she have regular appointments with her psychiatrist?
I think it would be worth writing all your issues down and either sending a letter to the psychiatrist or asking for an appointment because of your concerns about the treatment she is getting. However, I'm not that experienced in dealing with mental health and I think you should first get advice - have you had any contact with MIND ? They have a website and helpline - why not call them and explain what's happening with your mum? They have so much experience they should be able to help you and give you support.
The website is http://www.mind.org.uk
helpline no. 0300 123 3393 open Monday to Friday from 9am - 6pm

Good luck,
Lesley xx
Hello Conrad
You sound to be in a very difficult situation to put it mildly.
I care for my mother who has schizophrenia and suffers very badly from delusions, and yes it is difficult to tell what is real and what is not.
Does your mother have a psychiatrist and are they aware of what is going on? If you are not happy with the CPN I would complain as Lell says. A good CPN can really make all the difference. Years ago we had a CPN who never turned up to appointments - stressed out my mum a lot, I didn't complain at the time and really regret it.
I can really recommend Cloverleaf Advocacy who offer free advocacy services for both carers and carees. I think they only operate in the North of England though.
Wish I could say something more constructive.
All the best.
Hi all, thank you so much for your replies.

Things have got even worse since I wrote this. I did not get to bed until 1pm which meant I was up 29hs. Since I woke I found out that my mum has been crying and now thinks I may be part of something to get her locked up in prison or in a mental health centre. We have been talking and I think she now sees that she is wrong... but I know how she can act when she needs to.

I am going to call the CPN tomorrow and ask her not to come again. I do worry that this could cause problems as they may think they need to manage her in some ways that they are unable to do now. I think they think she may be a risk to people... She has never hurt anyone but I "think" she has said that she "could" if she got really bad.

The problem is that she has told them things that she never trusted anyone with before. She now has lost all her trust and I think her CPN knows this now. I do worry that because of the things she has trusted them with now that they will use it against her.

I am starting to get really worryied myself that they are doing something to get her locked away somehow. I think that they are trying to stop her grandkids coming over.
She has never done anything to them. One of them has Asperger syndrome and not seeing her grandmother would cause unknown stress to her and my mother.

I really am close to breaking point. I do not know what to do. I want to protect my mum but I know the power that these people have. If I fight them they could ruin my mums life and mine.

I do not know how to complain and what is best to do. I am scared that if I do that they will do something bad to me or my mum.

Thank you for your help.
hi and welcome
hi Conrad,
I'm sorry things have been so bad for you. I'm worried about you - you can't go on for long with little sleep and so much stress. You need to look after yourself so you can help your mum.
Could you call MIND helpline ? You need to talk to someone to relieve the stress you are under now, and to get some advice from people who know the system and have lots of experience in dealing with it.
It would be a good idea to get an advocate involved to help you,as Silverday said.
Why not call MIND to start with, they may be able to put you in touch with local sources of help.
When you are so stressed and getting no sleep it's impossible to think straight, and so hard to take a first step. Please try to call the helpline, they won't be bothered if you find it hard to explain - just tell them what you've told us on this forum.
wishing you all the best,
Lesley xx
your right. I know that sleep can really mess me up. I had a good sleep as my mum had my sister to look after her... Like she is at this moment.

I do worry that my mum is lying about what she is feeling. She has done this before and then taken a overdose or done something to try to kill herself. It is so hard not to be normal around her as I keep thinking she is planning to do something.

I will call this line tomorrow. Its late now and with my sister looking after her maybe her mind will change.

I know she is having delusions as she keeps thinking she has marks on her face and smells things that are not around. She also told me that she woke up a few months ago after seeing her boyfriend on a bus and did not know how she got on it. I think she told her CPN this so I worry that they may do something... or be trying.

Anyway, I know I am sounding as paranoid as my mum does sometimes... Maybe its just been a bad week and I will see this as minor soon.. I hope.