Friends, Family & Carers Forum

[Dougal1973]

Hi everyone
I'm very new to this so apologies if I ask some silly questions. Two months ago my husband was admitted to hospital after a psychotic episode at work. He was in there for four days and released. In hindsight both myself and his work had noticed that something wasn't right for a couple of weeks. He was and is suffering from paranoia, delusions, disassociation from reality, thought blocking, hearing voices etc.
When he was released the nsw mental health team followed up with a psychiatric appointment and a home visit. Then nothing. I rang them and they came out again two weeks ago and made him another psychiatrist appointment for a months time. Since then he has run out of medication and is refusing to renew his script. He has deteriorated quite badly in the last few days and was particularly bad last night and is starting to say nasty and unkind things as well which is so unlike him. He is refusing to go to the GP, hospital or specialist. I rang the health line again last night but it appears that not only had they officially discharged him but they couldn't come out for 3 days and told me to take him to hospital.

I'm feeling very let down by the public health system and very guilty at the thought of calling an ambulance as I know he won't go quietly. He doesn't believe there is anything wrong and is blaming me.

Does anyone have any advice on who to turn to? Do GPs do home visits for example or should I turn to a private health provider?

Thanks for any of your support, so much appreciated
😃

[CherryBomb]

Hi @Dougal1973,

Welcome the the Forums, and thanks for post for the first time. 

The questions you asked were not silly at all. Navigating your way through the mental health system is complex, and knowing what to do, while doing right by your husband is not easy. 

It sounds like the situation you in is tough. Unfortunately, its quite common for people to lack insight when they are unwell, so it's understandable that your hubby doesn't want to go to hospital. 

If you feel that your husband may be at risk over the next three days, then it's important that you call an ambulance/CAT Team. He might not like it at the time, but safety is important.

Would your husband be willing to go to the doctor? If you're husband is not willing to see a doctor, this creates some difficulties as an assessment will need to be made to see if he need involuntary treatment - I'm think private providers are unable to treat people involuntarily. 

You may want to check out and write in @Zam's thread here. They have lived experiece, and may be able to answer your questions about hospitalisation and treatment.

Hope things get better.

[coffeegirl]

Hi @Dougal1973

There are some local community based organisations that might be helpful. 

It would be worth calling Mental Health Carers NSW who can refer you to services in your area.

I hope you're doing okay and are getting some breathing space for yourself.

[Former-Member]

Hi @Dougal1973
How are you going?
Darcy

[Dougal1973]

Hi @Former-Member

Sorry for the silence, it's been a challenging couple of weeks. Since I wrote the first post, my husband has been sectioned by the community mental health team after I put a rocket under them. He has been in hospital for 2 weeks now with only some marginal signs of improvement - very up and down. The doctors are still dithering between a diagnosis of BPD or SZ or both. He had a couple of good days over Easter but then has been bad again from last night. He's now starting to withdraw from me, telling me to go back to work and not come and visit. I know to disassociate the illness from the person and I know he doesn't mean it but it's hard. I will keep going though. My challenge now is ongoing help. In some ways I suspect this is the easy bit as I know he is safe in hospital and I can "give him back" after a period of escorted leave. The doctor's are talking about discharging him under a CTO when he's ready but after my experience with the outreach team before I am loathe to do this but unclear on my options. It also sounds as though I cannot use our private cover to get him more holistic help via a 3-4 week in patient program in a private facility when he is ready if he is also under a CTO. Any idea where I go or who I talk to to get advice on this? I am waiting for a call back from Legal Aid and the local family and carer group in our area. Thanks so much:)

[Former-Member]

Hey @Dougal1973 the legal did person can probably give you the best advice as they would be familiar with your state mental health act. It pays to do that yourself too as well as reading up on the disorders have put some SZ info in the "what's new" tab, helps with any diagnosis.

Hospital is the easy bit, living with the illness is the hard work. Being married to someone with either of these disorders is difficult, whilst having a current working diagnosis of BPii, Sz is in the differential. I am happy to answer any questions you may have. I have been married 33 years. Have been through many meds (up to no 15 if I count right, not all at the same time). My husband has been compliant with meds but side effects are a big issue, this included sex dysfunction whilst on a drug given under a treatment order which just added to his distress. On the forum med references can only be generic.

When you say BPD do you mean borderline personality disorder or bipolar? BP is the usual abbreviation for the latter.

Take care, if I can reiterate just how important it is for you to get that self care and support happening as early as you can.

Darcy

[Former-Member]

PS @Dougal1973
Apologies not needed, don't feel you have to reply at all or in a certain time period. I like to do a quick check in so that you know you are being thought of and understand just how hectic and emotional things can be.
There are not so many partners of patients with differential of SZ and wanted to let you know you are not alone, there are more with BP, some with BPD.

[Former-Member]

hello @Dougal1973 @Former-Member

I can empathise with some of the feelings that you are experiencing. Also some of the reactions that your husband is having.

My son was where your husband is now, in october last year.

He had an awful experience with the cat team with whom he was assigned. I had been told prior to my son's release that the particular area he was assigned to was the best in the system. Therefore I dread to think what appalling treatment was given in all other areas.

I managed to organise a second assessment by a psychiatrist who practised privately as well as at the public hospital. He literally told me upfront the bare bones of the truth. He explained that my son was seriously ill, however felt that he was well and the government was after him. Public hospital part of the government, also all police, police attended when he was retained. The psychiatrist also explained that he is an adult and can receive no help until he seeks it for himself. Transferring him to a private hospital would only mean that he would discharge himself, discontinue all medication and stop seeing a private psychiatrist appointed. This is what woke me up.

I have read much on schizophrenia now and this is an ongoing research. Even the medical, pharmaceutical world have not got it right.

There needs to be a balance between, respect and help.

Anyone suffering from hearing voices, hallucinating has to be extremely frightened. The fear of feeling that they are never safe, that people are trying to poison them, take their life, their money, put the lives of their family in danger is a living nightmare for them. No small wonder that they push us away. You are not alone there.

Most importantly remind yourself that your husband is still there and the symptoms he is experiencing as well as his reactions are only a part of him.

Have a look at posts by Zam who has schizophrenia and writes about his experiences within the public system also answers questions. His thread is invaluable.

also you will see other threads written by parents of younger adults. these will also provided you with more facts and an understanding of how it feels from the carer point of view as well as from the person with the symptoms.

i started a thread called circle of trust if you want to have a look.

Those of us in similar situations try to support each other on here the best we can given that every person is a unique individual.

or just stay here basically look around on both sides of the forums and follow your own intuition.

I do hope that you keep writing

[Dougal1973]

Thanks @Former-Member and @Former-Member

Really helpful and will go take a look. He has deteriorated a bit in the last couple of days but have to keep reminding myself to reset every day. Something you said struck home @Former-Member about hospital being the easy bit as I hace been saying that to people for the last 2 weeks as well. I am dreading living with this but also seeing it as an opportunity to change our lives and live a simpler, healthier more holistic one as well if we can. Out of tragedy breeds triumph or something like that!

Legal aid have been very helpful but as you say @Former-Member I have to think about what is right for him.

Getting help for myself has proven more complicated ironically enough! My GP referred me to a practice who said they couldn't help so I have to go back to him to get another referral and 2 carer agencies I have rung have not called back. However, I am not deterred by a fight so will keep pushing. This is a marathon not a sprint and fortunately I know a little bit about those:)

Love to all xx

[Former-Member]

Hello @Dougal1973

You are doing the most that you can as well as listening. You are looking out for yourself as well.

Have you tried Carers Australia. They have a mental health section for carers. This is where I was allocated 6 psychology appointments within 5 months.

Darcy is correct in saying that the time that they are in hospital is more like a respite break for the carer than a solution.

However it does not have to be seen as negative. The person is required to take medication either voluntarily or involuntarily if detained under an internal treatment order. Yes they are then usually discharged in to the community under a CTO monitored by the mental health team assigned to them.

The vital point in all of this is the person who has been diagnosed and how they are treated.

In most cases they do not agree with the diagnosis (imagine being told that you have schizophrenia or paranoia- if you know nothing of the illness only images of old films where the person is depicted as insane and sanctioned) I would not accept that either. We are talking within a short period of time feeling as though our rights have been removed from us.

Several hospital detainments can lead to realisation after noticing difference within themselves when on medication.

Private hospital will not work if the person does not believe that they are ill or need help. That is the principle behind any hospital, treat an illness or injury.

This all sounds very harsh.

I have found relief doing my own research as well as from reading similar scenarios from other carers on this forum.

My situation is different as my son has left the state. However I have had progress. He now has given his mobile number to me. I generally let him get in touch with me as my ringing him causes him to feel suspicious and heightens his paranoia. The last few days have been extremely difficult with verbal abuse. I managed to stress again to him yesterday that I will not listen to that. I have found that in listening to the paranoia I can find a way in to the conversation and he responds intelligently with his own voice. I am living very much in the now with him as his mood changes constantly and it is so much harder not being face to face. I do feel that he trusts me now though as he gave me his credit card details yesterday wanting me to order something inexpensive on the internet. I had said that I refuse to use my card. Fortunately it did not go through. However he trusts me as I have left a message with the company. So for me it is very much listening, never assuming, talking about his safety. we talked about trusting people. He said that he didnt trust many people. I replied that as I have aged I trust fewer people however I do trust some people. It is important that he has someone in his life who he trusts living nearby him. I have been able to bring up the subject of him living in a different state and talking about the positives. He seems more comfortable discussing this now.

As I said this is now. I read somewhere not to think about how long the journey is, to just concentrate on how they are feeling now.

I hope you find some help in my ramblings. i write differently to others. I write more from my feelings than my thoughts and let it flow.