Carer needing a vent

[AnxiousCarer]

I am the main carer for my DH who suffers from episodes of psychosis. For years we bumbled from one crisis to another not understanding what was going on or why. He finally got picked up by a fab mental health team about 3 years ago after a catastrophic crisis where we lost absolutely everything. After that we seperated for a while and I was treated for depression triggered by the stress. We rebuilt our relationship and our lives have been through a stable few years where life has been better than it has ever been.

I thought that finally withthe right support and medication for my DH we could enjoy our lives and everything was going well. The psychiatrist gradually reduced and then stopped his medication and all seemed ok. A few months ago he had another crisis out the blue after a stressful period at work. We were away from home at the time and I was had to get him detained for emergency assessment and then track down the relevant teams in the local area. The episode itself was very traumatic with him becoming very agitated and distressed and being detained by the police. He had a horrific time as we was too agitated to be managed in the hospital and was detained in the police cells. I had no sleep and then when following assessment he was released had to get him safely home whilst he was really angry with me for getting him detained.

His team at home have got him back on medication and things have settled but he is by no mean back to where he was prior to this episode. He doesn't want to talk to me about whats happened. We used to talk about everything and he would tell me about his mental state and let me support him. Now he's shutting me out, he doesn't want me to have any involvement or contact with his CPN or the family liason nurse who's role is to support me as his carer. He thinks I'm medling. I have been in contact with his CPN behind his back when I feel I need to which I've never felt I needed to do before and makes me feel really guilty though his CPN agrees is necessary. Generally I don't get involved with his appointments with his CPN or psychiatrist as we both agree he needs to be the one in control of managing his mental health.

He's not looking after himself at the moment or following the preventative advice from his CPN, hes recently found out his contract is not being renewed at work and is devistated and angry as he was let to belive it would become perminant. Since this my anxiety levels have sky rocketed and I'm just waiting for another crisis. I feel helpless and am trying to be supportive, but it always falls to me to pick up the pieces. When he's ill it affects me as much as him and it really pisses me off when he doesn't follow the advice he's bedn given and puts himself at high risk of a relapse. Its hell for both of us when he's ill. I love him so much and when he's well hes an amazing husband, theres no way I'd leave him. Our period of seperation was really so hard and I don't want to go back there. I think I just need to vent and have someone listen to me for once.

[KeemaNaanAndCurryOn]

This sounds so hard for you. Quite often it's the people around the person who becomes ill who end up picking up the pieces like you are. Have you been offered a carers assessment at all? Usually this is offered to the main carer / spouse etc to see whether there is anything that can be done to support you as well as them. I know our local service offers things like a Carers cafe where people can go and talk with other people and offer help and advice to each other. Maybe there's something like that available in your area too?

You're absolutely right to go behind his back to the CPN etc when he's not complying. I do have some sympathy with him as I hate having to accept that I'm ill and need intervention and that means I've been guilty myself of not complying with medication. I think the outcome of doing that hurts my family more than it does me, which is what is making me engage as much as I can.

You're allowed to find this hard, to be angry and frustrated with him and to feel hurt that he is cutting you out and not talking to you. Some of that is the illness, yes, but that doesn't mean you have to be OK with it all as the impact on you is dreadful.

I'd start by asking for a carers assessment and for information about any local groups that you may be able to get help from for YOU and not him - he has the care in place already. Local services should know what is available and at least be able to give you some pointers. Other than that, vent away on here, I'm usually around to listen.

[AnxiousCarer]

Hi, thanks for the reply.

I have a CPN in his team who is my family liason whose role is to support me. In the past he has been ok with this, the problem is that this time he hastold me he ddoesn't want me to get in contact with him. I met with this CPN once when DH was quite poorly and told him about our meeting, what we had discussed and what I felt might be useful comments that he had made. DH was really angry with me, he said he didn't trust this CPN and thathe was worried that anything I talked about would be passed on to his CPN and psychiatrist and used against him. He said that he thought if I needed support I should get it from somewhere else e.g. through my GP or Occupational health at work. I have accessed occupational health in the past and the councelling there is very good, the councellors mother had MH problems so she can relate a bit, but I feel the CPN is more useful to me at the moment. I've soldiered on without contacting him again for 2 months now and today I've reached breaking point and asked for an appointment with him. I feel like such a horrible bad wife for going behind his back. I pride ourselves on the communication in our relationship normally and meeting this CPN behind his back really grates on me, but my anxiety is sky high and I know I need to address things before I get ill myself.

[dangermouseisace]

If I'm reading this right the CPN you are meeting with is your CPN allocated to talk to you.

I think you're perfectly right to go behind DH's back and speak to him.

The thing is…if your DH wants you to support him/actually stay in a marriage with him, he's going to have to accept that you need support too. The GP/counsellor are not going to be able to give the same level of support as the CPN will as they will know more about his particular illness/medications etc.

[AnxiousCarer]

Thanks dangermouse,

Yes this CPN is allocated to me, for my support and you describe exactly what I'm thinking. I just hate not being able to be open and honest about it, and I'm not convinced that noewvis the to have a blazing row about going to see the CPN either. I can see DHs point of view but I think its clouded by him being unwell and not fully accepting that fact at the moment. I tried to speak to him last night about how anxious I'm feeling and it didn't go well. He can't see what I've got to ferl anxious about and feels I'm trying to take away from how he is feeling and make it all about me. 😕 This isn't my normal considerate caring husband speaking.

I can tell he's in a bad way right now and I'm just sitting here waiting for everything to fall apart again. Well obviously I'm not just sitying here I'm supporting the best that I can, but it all feels like it is spiraling out of control again and I'm terrified.

[AnxiousCarer]

Now is the time, sorry

[dangermouseisace]

oh dear OP. You definitely need support- don't feel guilty about taking what has been offered to you…is there any way you could just go and speak to the CPN without telling him/him finding out?

[AnxiousCarer]

Yes thats what I'm planning to do. The CPN normally meets me at my work after working hours. I often work late so I don't think he would ask any questions. I'm sure work would let me finish early too as they are aware of my situation. It just feels really sordid pretending to work late even though I know its not.

DH has just told me he's scared I'll have an afair because he knows that I'm unhappy. I've tried to reassure him. He often worries that I will leave him or cheat when he is ill and I think one of his worries about my CPN is that he is male, although hes just got worried about me meeting up with a female friend tomorrow too.