Friends, Family & Carers Forum

[GreenT]

Hi Barbara,

Thank you so much for sharing, I feel much less alone and yet completely sorry that you, your son and family are going through a similar thing. I know that smell. I know that shame of feeling like you're living in part science lab, part zoo, part sewrage farm.

I completely understand the not leaving - the most difficult thing is that we love them and particularly as a mother myself I can totally understand how it goes against every fibre of a mothers being to leave their child, especially when you know it's a sickness and not who they really are.  At the same time it's unbearable to live within their world for those of us in the caring role.

Thanks for saying I'm brave, don't feel it, however I'm more glad that we can hide behind our screens late at night and connect over the most important things which we don't have the space, opportunity or courage to bring up, sometimes even with our closest friends and family.

I have made contact with my husbands psych, even though he has refused to let me go along to appointments previously beucase i think it's imporant she knows about what goes on at home and we are going to talk about options open to us.

I would hate to go down the involutantary hospitalisation road, and beucase he's not a threat to us, or for the most part himself,  I don't know if that will get to that. I am just really hoping that my husband can understand that this is not normal behvaiour and his current medications are not making anything better and for his own wellbeing and that of the people that love him, he needs care.

Thanks again Barbara and I wish we had a magic wand that we could wave and have them happy, healthy and living a full life.  Please let me know too how you are traveling along thee way.

Until then, we've got to look out for oursleves, and eachother 🙂

[williamtell]

Altho my situation is not good I realise things could be worse for us in caring for a son.Please get some help.It is not going to be easy and it would be lovely to have someone walk with you through the process but you really really need to change things.

[Shaz51]

Hello @GreenT how are you today my friend , have being thinking  of you today

Hello @williamtell, @Barbara, @Former-Member, @Former-Member

[GreenT]

Hey @Shaz51 Thanks for checking in.
Things are getting worse on the husband front. There's been an increase in what's probably considered psychotic behaviour and I'm trying to make contact with his psychiatrist to look at treatment options.

I met with my doctor for a regular check and opened up to her about was going on and she was fantastic.

She's met my husband and got to observe his delusions about our son suffering parasitosis herself (he insisted on his poo being tested - no monsters present). So she spoke with some experience that that type of delusion doesn't just go away by itself and needs specific medications.

So I'm ready for what's next - it's just my fear of dealing with the problem head on that's a problem. My husband has never been violent so I don't fear that, it's just that he's so convinced there's just the physical problem and not mental illness driving the crazy behaviours that he talks me down and tells me I'm the one who's got the problem and if I really understood science (he's got two science degrees) and cared enough to look at his research (including the invisible made visible with aquarium supplies) I'd change my mind.

Tomorrow is a new day.
I'm cuddled in bed up with my little boy, with 3 toy fire engines and his little breath tickling my cheek and for the next 8 hours I'm in the best place there is.

[GreenT]

@Barbara sorry I replied to your post below but hadn't used your @Name

[GreenT]

@Barbara sorry I replied below but hadn't used you @Name

[patientpatient]

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@GreenT wrote:

...So I'm ready for what's next - it's just my fear of dealing with the problem head on that's a problem. My husband has never been violent so I don't fear that, it's just that he's so convinced there's just the physical problem and not mental illness driving the crazy behaviours that he talks me down and tells me I'm the one who's got the problem...

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Hi @GreenT, we had to deal with health-related delusions for years. Again, not on the scale that you're dealing with, but still significant and very disruptive. We consulted doctors and specialists (asthma, sleep disorder, neurologists and others). My son believed that carpet, smoke, TV screens and phone screens were damaging his health. He also believed he had a serious problem with bones in his neck and he had many Xrays and scans. It all led to eventual psychosis and one prominent feature was that he then shifted the health concerns onto me, believing I was seriously unwell and needed expensive treatment overseas. To cut a very long story short, the path then went like this: psychosis, hospitalisation (twice) then home with antipsychotic meds and frequent visits from the CAT team nurses. Then long term follow-up with psychs and medication adjustments. At the time I felt it was "all tunnel and no light". For years, smoke and air quality were big concerns. He would flee from a camp fire and ended up living by himself in remote places. Four years later, he's sitting at home and happily lights an incense stick. Some of those delusions just vanished.

[Shaz51]

Good morning @GreenT 

I am sorry to hear Things are getting worse on the husband front, sending you lots of hugs and we are here for you

My husband has cancelled all help , seems to go around in cycles , he had a breakdown 2 years ago and took himself to hospital , they kept him in hospital for a couple of weeks , changed his medication which has helped , but he still has ups and downs every day

Last week was bad and he wanted me to ring the specialist that he saw in hospital , I rang , but He is not on the list anymore and he will have to be reaccessed again , no way he said

[Jasminej]

Oh my goodness. I agree with everyone who has replied. You're husband is very very ill and reaching out to psychiatrist and CATT team is a matter of priority. I was under the impression that the sick person had to be violent towards others or himself for the police/CATT team to intervene. But I found out that it can also be for 'loss of reputation'. You have been an incredible woman to put up with this and getting him help is the best thing for him and your child and you. The psychiatrist and his gp and CATT team need to know exactly what's happening. Go meet them in person if they don't listen on the phone and take photos and a letter. They will surely point you to support services as well. Good luck. I'll be thinking of you.

[Barbara]

Dear @GreenT thank you for your reply, gosh i dont know what to say, every day seems like a nightmare in my life. i am not in control of anything  nor myself and no way my sons obsessions. his place is getting worst by the minute and i feel sick every time i have to enter. he only got this hoarding obsession during hospital stay and after dicharge. he is on very strong meds which dont seem to make him better. i just have to try and ignore his state of mind and be grateful he is not violent to me at the moment which is thanks to the meds, they make him very sleepy and dosile. but what a way to live a life. if i only mention anything about the mouldy food, smelly liquids and toilet paper, terrible mess everywhere, not flushing toilet, not washing his clothes since many months, etc he gets so mad at me and it triggers another psychotic episode. so i just have to back off and 'stop nagging'... he has so many other weird obsessions which totally contradict eachother, i can write a whole book. i have told his case worker and he arranged one therapy session (one every 3 weeks which is not sufficient) and they discussed why i am so hostile towards my son. i only want him to live in dignity and not like an animal. thats all. just a basic standard. nothing fancy. i dont know how much they can see that it is not 'normal'... and if they would like to change their behaviour. this illness is a mystery to me. i am having so many heated arguments with my son that i have to give up and just wait how it develops. i can not do this by myself, i need help from outside but either way it will take a long time. keep in touch and please update your story, stay strong and hold onto the small positive things in life. take care!