Looking for advice from someone who has suffered psychosis diagnosed with scitzophrenia

[Catz-88]

Hi everyone I'm hoping I can get some guidance on how to communicate with my son or if I should just wait for him to contact me once he's better.Once he gets unwell and in hospital having treatment, he gets distant and paranoid about me.

The Dr asked him if he knew why he was there and he said yes because of my mum.

I haven't seen him for a few days now because the last time I saw him he looked really anxious of me.

I usually visit him every other day.

Do I visit him to show him I'm there to support him or do I give him his space to recover.

I just wish I knew what was going on in his head and how to help him

It's heart breaking

Just feel a massive heart wrenching loss everytime this happens

[bisketty]

Hi Catz, I had postpartum psychosis and had a time where I had some paranoia. Because I was psychotic at the time, I couldn't really make informed choices or express myself well. Perhaps the best thing you could do is ask if he wants to see you, express that you want to support him / explain that you will leave him alone until he contacts you - let him feel like the ball is in his court and he can choose to have time alone or your support. Keep in mind he will probably have a better understanding of what happens after the psychotic episode is over, and his feelings are temporary and not accurate.

[Catz-88 in reply to bisketty]

Hi thankyou for your reply. Yes I completely understand not to take this personally, I'm used to this now, it really broke me the first time he was hospitalised and blamed me because I actually was the one that got him sectioned but obviously it needed to be done to get him well but I felt so guilty like I had done something wrong. Now I don't care that he blames me I know once he's well he will understand. I'm trying to understand what happens to the person when this happens. For example do you feel scared, I don't want to unsettle him and make him feel unsafe, or is there still a part of u in there that will know I'm Ur mum and feel comforting knowing I'm there for u. Your reply has helped I've had a few rest days I'm going to go and say what you said and what I've been thinking.

That I am here and will wait for him to get better.

Although this is his 5th admission I'm finding it harder to find the right words to say to him I think I'm just exhausted xx

[bisketty in reply to Catz-88]

Hi Catz, that sounds very difficult. He is lucky to have you caring about him.In terms of what's happening, I still remembered very familiar people like my family and recognised doctors and nurses, yet I found one delusion I had was that everyone had decided to put me in an experiment. I didn't trust my family or anyone, really. It's scary how much you can become absorbed by and believe I'm these delusions. I also believed that I was controlling the water supply and electricity for a time, which was bonkers but seemed so real at the time. The best way I cam describe it is feeling like you have become aware of another dimension or dimensions.

[Catz-88 in reply to bisketty]

Thankyou for your reply and I'm sorry that you have been through this, it really is heart breaking to see people go through this and you just feel helpless. It must be so scary for the person going through it. He does unfortunately think that I am just putting him in hospital that I want him locked away. Really hurts that right now he thinks this he must feel so alone. It must be really lonely at the time for all of you experiencing this xx

[Maria_at_APP Moderator]

Hi Catz-88,

I am sorry to read that your son is in hospital experiencing psychosis. You must feel really torn between wanting to help and seeing him distraught.

I am a peer support volunteer for this charity Action on Postpartum Psychosis who helps mums who have experienced psychosis after having a baby.

While I was in a psychiatric ward at the peak of my illness I remember the visits from my husband and brother, even though I remember very little else from that time, so even though it does not seem like it now, your visits have helped your son. My paranoia revolved around my family too and I could become really agitated for long periods of time. It was very hard for those closest to see me in that state, so it is important to look after yourself too, take some time to see a friend and have a good chat, perhaps the mental health team following your son offers some support for family members?

The mind website has some good resources on supporting someone with a diagnosis of schizophrenia:

mind.org.uk/information-sup...

Take really good care, hope your son starts recovering soon

[Catz-88 in reply to Maria_at_APP]

Thankyou so much for your reply. My son is only 21 and this will be his 5th admission so yes it's tough and I also lose part of me every single time, the thing is it's not even the fact of him being unwell anymore, it's all of the fighting to get him help the lack of support around care and the failings of his care plan after. The last hospital discharged him too soon, despite me saying he isn't 100percent and this isn't the first time. They discharged him to a rehabilitation unit promised us treatment support care said it would be great for his recovery instead. The team said after 3 weeks of him being there that he wasn't engaging he wasn't well enough to be there and he needed to go back to hospital. Although there wasn't a bed. Each day I went up there he had rapidly deteriated. They were just leaving him pacing in his room so I spent every day on the phone trying to get help for him calling on urgent meetings, the care co ordinator and social worker didn't find it urgent as they never responded. So in the end I had a meeting alone with the rehabilitation team. Told them they need to approach another hospital or put him in private and bill the services.

The next day they had contacted somewhere in Woking and agreed to swap a patient so that he can get a bed.

I suffer with chronic fatigue fibromyalgia anxiety and depression I also have 8 year old twins to care for so it's really tough and I'm always feeling like I'm not doing enough, it's hard to let myself rest when I know he's not getting the correct care.

My next step is to get a solicitor so that I can make sure everyone puts the correct after care package in for my son and that they stuck to it and don't fail him again .

It's just finding the right solicitors

[Maria_at_APP Moderator in reply to Catz-88]

Hi Catz-88,

It sounds so hard and difficult, I am so sorry to read. You may be already aware, but it could perhaps be helpful to contact PALS for your local trust?

I am sorry I don't have experience to share about engaging a solicitor for this type of situations.

I remembered that the Mind website has some good resources for carers and there may be something useful there for you to look at when you have a bit more of breathing space, I don't want to add another thing to your already pretty full plate:

mind.org.uk/information-sup...

Take care of yourself

[Catz-88 in reply to Maria_at_APP]

Bless you thankyou for your reply. After speaking with everyone today I have managed for the first time in a long time to have a me day, I got some house work done watched some TV and took a well needed nap. I have contacted the above I have complaints in place I actually had mind on my mind to contact but had forgotten so I will give myself today to recharge and contact them tomorrow.

Thanks again and I'm sorry that you go through this too xx

[hgallo Volunteer]

Hi Catz88, I'm one of the volunteers at app. I had pp after the birth of my twin girls in 2016. I was very paranoid and suspicious of those close to me, including family. I refused to see my mum a couple of times when I was in the mbu. It must've been hurtful for her.So I'd say take it at his pace. Maybe ring the unit before and see if he feels up to seeing you that day. Is a phone call or a letter an option maybe? When I had psychosis I was paranoid and delusional and during my acute phase only saw people for very short times, if at all. But when I was lucid and getting better I did start seeing family again. It takes time. But we're here if you need to chat. Take care xx

[Catz-88 in reply to hgallo]

Thankyou for your reply. It's helpful to get an understanding from someone who has been through the psychosis because when he is well he doesn't like to talk about it so I never fully understand. I get sick trying to be in his head and my head gets scrambled of how best to support him xx

[alisonrw Volunteer]

Dear Catz-88

Thank you for writing on the forum - I'm sorry to hear that your son is in hospital experiencing psychosis.

I am involved with APP as I had a higher chance of experiencing postpartum psychosis due to previous episodes of psychosis before I became a mum. I had three hospital admissions in my mid twenties due to recurrent episodes of psychotic depression and have had episodes since when I haven't been admitted. As part of this I experienced paranoia and felt unsure of what was happening and unable to trust family members and staff. My episodes have generally revolved around themes related to me being sent to prison and being held in one place whilst evidence is collected, so when I think back I can understand why I would've felt mistrustful of family. This must have been incredibly difficult and confusing for those around me to understand but it was very real for me. I am very grateful to family who cared for and supported me.

You are such a caring mum to write on the forum and reach out for support and for being an advocate for your son so that he gets the support from services that he needs. As others have said please don't take this personally and take time for yourself when you can.

I found the YouTube channel 'Living well with Schizophrenia' helpful to understand psychosis. There are also several videos of carers speaking about their experiences. There is also a website connected to the channel livingwellwithschizophrenia...

Peer support for carers is becoming more widely available through the NHS in the UK. If you feel this could help it could be worth asking your son's care team if they have a peer support worker as part of their team. EmiMum above also posted a link to Mind who also run local groups for carers in some parts of the UK which may be worth taking a look at if if you feel it would help to connect with other parents/carers supporting loved ones with mental illness.

Thank you again for writing and please write again if this would help. You aren't alone and I hope your son feels better. Take good care of yourself

[Catz-88 in reply to alisonrw]

Hi thankyou so much for your reply for your advice and your kind words. I'm so sorry you also experience this it also must be really hard from those going through it aswell. I always try to put myself in his shoes to try to understand what he's thinking and feeling and it really hurts. Stay well stay strong and stay lovely thankyou xx

[Fageras Volunteer]

Hi Catz-88. I’m really sorry you and your son are going through this. I had psychosis at the onset of my PP which lasted for weeks. I can only tell you about my experience which was that it made me very paranoid and scared of most people. I have great relationships with both my mum and dad but had really weird thoughts and said terrible things to both of them. They kept coming back to see me though and I knew they were always there, which was important for me. My mum found it very hard though. I can still remember what I thought was happening and why I said what I said at the time, but it had nothing to do with reality or how I really feel.

I hope that helps a little.

[Catz-88 in reply to Fageras]

Hi thankyou for your reply. Yes I really understand this isn't personal I'm just trying to find answers to how best to communicate with him but as you and everyone else says is all I can do is show up and be strong and show that I'm always going to be there. Stay strong thanku again xx

[Chesterjackson]

Hi, I just want to say that you are doing the right thing checking if he wants to see you as what goes on in your head at the time is not real. I was so traumatised that my family were my enemy and I said some awful things to them. One day I told my mum she wasn't really my mum!! I knew it was stupid because I am a twin and fortunately she doesn't suffer from psychosis. I even told the doctor one day that I was Princess Diana so as you can tell the thought process is all over the place. Some days I would remember the stupid things I said and did, but other days I would have absolutely no recollection of what happened. Stay strong for him, none of this is his fault. It is like having a loose connection in your brain. Look after yourself too as knowing what my husband goes through it is so hard on both sides. X