I'm Struggling: DS with schizophrenia

[Lifegavemelemons]

I've just spent easter with my 33 yr old DS. Diagnosed with paranoid schizophrenia 7 yrs ago, after 18 months of initial treatment with an early psychosis team, and I'm feeling broken. He's never going to get better is he? this is it now. This is the legacy I will leave to his siblings, having to deal with a brother who will sit and talk to his voices, the very important people who communicate with him psychically, who affirm that he is the saviour of mankind.

He has a MH team, they are great. He is on an injected monthly medication, but its not removing the delusions. There is a medication that might address that - but it requires the patient being willing to take daily tablets, he won't.

We've just come through a crisis couple of months where he insisted his meds were reduced - and he spiralled downwards. Fortunately he accepted that he needed to up them again as every friend and family member told him he was not making sense. His partner, who is lovely, and has her own MH demons so understands, has cut off contact to protect herself. We had hopes that his relationship with her would pull him back into the real world, but instead he was pulling her into his - and she rightly resisted.

I'm torn between sadness at how unfair this is, he was so smart, funny, engaged, with so much potential, and anger at him for the cannabis use as a teenager that I didn't know about (stupid me, thought he was too smart to be dragged into that) and anger at his ex partner who introduced him to stronger drugs that have fried his brain, and him for not being stronger in refusing to engage with that. His siblings focus all their anger on the ex partner, I know it's not that simple.

They say that as a mother you are only ever as happy as your least happy child. Fuck. that's it then.

I'm so sorry to hear about this tragic situation. Your pain and sorrow must go very deep indeed. I can only offer my sincere condolences this is your reality and wish that as a family you help each other through this situation.
I hope that someone with more experience will come along and perhaps be able to offer some hope.

Thank you - it hit me hard after he went last night. We were so hopeful at the start, when he seemed to respond to meds, got a job, went back to Uni - for it to all fall apart again, he was sectioned again, new meds, hopeful again.... we've been through the sectioning cycle three times as he declares himself well and comes off meds.

Small mercies I suppose - it didn't happen this time.

So many false dawn's, no wonder you are feeling crushed and full of regret at the way things have happened.

I have no wise words to offer not having experienced similar. However, if you listen to podcasts you could do worse than looking at this - https://open.spotify.com/show/1oNZHROx2mtCVzNxlH0IKa?si=L7AWWtNLTomeOMV_OtLk5Q

Respected well known expert psychotherapist discussing all the gritty and difficult aspects of raising children, answering the hard questions, including the 'no hope' situations. Each episode covers a different topic, I think you may well find at least one of maybe more than one which may be helpful to you.

I hope the future is brighter than it feels to you now that it is going to be. Wishing you strength for whatever comes your way. 💐

For instance hard/complex topics covered include aggression, schizophrenia, estrangement...

thank you for that - when I'm feeling more able to engage I will listen to those - right now I just want to hide, to run away and join a convent and not have to dread a phone call from one of my other children with yet another tale of ways he is impacting on their lives and their absolute despair at being unable to help him.

Those are very understandable feelings. 😔
Sometimes hiding away is the best thing to do.
I wonder if it is worth discussing with your other children the concept of available emotional resources differing from day to day. So that you acknowledge they may need to talk about those things, but they also realise that when they want to talk might not coincide with when you're strong enough to do that.
Then you have the groundwork for agreeing that if they need to talk they check first and if you're not strong enough at that time you both set the conversation aside and you can then come to it when you're better able? Maybe the next day or the next week.

Maybe this is a superfluous suggestion, but I think our children sometimes need help to realise you're only human and see that through their own distress.

I don't think the podcasts are a magic wand by the way (of course) but if they help you unravel your thoughts and feelings a bit and help you feel seen. That's not a bad thing.

Hi just came across your post and I too am feeling utterly depressed at the prospect of my lovely son (nearly 24) having a shitty life after his diagnosis of paranoid schizophrenia. Like your son it was drug induced - cannabis, quickly followed with cocaine, ketamine, benzo's, MDMA, LSD etc etc. He has been sectioned 3 times already and is on a CTO atm but it's not going to have a rosy ending is it? Feel like my life for the last 4 years and for the rest of it will be marred by his condition - what am I leaving for his sister to cope with when I'm gone?

Shit isn't it?

I work in homes where people live with these conditions. We take very good care of people x they live different lives yes, but wherever possible we support them to maximize their stability and happiness.

I too am in the same boat. Son is 26 and spent most of his teen years sectioned in a forensic unit. At the moment is working but resists medication.... he stops and starts when he feels better. Then spirals.
I don't want to say it is nice there are others as that sounds horrible. It's good to chat though where others don't look or sound horrified. In a selfish way I hate this as my dad was also schizophrenic so I feel I am trapped in others hells.
My son was told no weed or booze. I suspect both. He is 26 though I can only advise. Sending all hugs.

HI @Stomacharmeleon - yes, my DS is drinking far too much too, not sleeping properly, texting people in the middle of the night, sleeping most of the morning. I dread getting a text or phone call because I never know what to expect, feel like I'm just living on edge all the time.

I can't imagine how hard it must have been to be a child of a schizophrenic as well.

As you say, good to know we are not alone. When he lived at home, at the start, I was part of a parents / carers group, but he lives in a different local authority area now and is under a different service. I'm not sure how much I could cope with being a part of any formal carers group these days - when I don't have to deal with him directly I just want to try to feel normal.

I'd love to know how to access something like that.

My daughter has a similar diagnosis for past 2.5 years, has been sectioned once. She has never used drugs, lived are rather naive life in teens early 20s. She is taking medication which is working but declined to take recommended dose. Everyday is a struggle for her, despite trying her best in her own way. She is not difficult, but is dependent on us. Like you, it has left me with a sense of sadness I never feel will leave me. Even if she manages to get a job and live independently, I will always carry more worry ofr her than her siblings. I feel my life will always be one as her carer, which depresses me. I am also upset about how cruel this illness is and how unfair she has had to experience this
Sorry, to offload, but hope it will help you know you are not alone

my brother is one of these people, too, since age ~29
It's not been tough on me. Perhaps I am a cow which I can live with.

I think my mother had made peace with the situation by the time she passed, too

Lifegavememelons, what do you mean, work in one?

Doesn’t the op mean she’d like to be able to access somewhere similar for her son?

Sorry - meant access that kind of support for my own dc. He's living in an HMO now - after living with me for 3yrs then his brother for a year - but it nearly broke both of us. He's not managing money well, we've all had to bail him out for rent now that UC doesn't pay the landlord directly. He needs structure and support and we are struggling to provide that.

Has he told you why he won’t take clozapine (the tablets)?
Has he said why he accepts the depot?
Are there any symptoms that distress him (not thinking clearly/ thinking too fast or too much/ voices saying bad things/ poor sleep/ lack of energy/ agitation) or just symptoms he gets something from (beliefs he is special/ positive voices)?

If anything is causing him distress, and he has a reason (any reason, even just staying out of hospital) to take medication you and the team supporting him may be able at some point to find enough common ground to try the clozapine to achieve a common outcome (this may mean moving away from the idea that the medication is for “schizophrenia” or to stop him hearing the voices he enjoys/ believing he is the messiah- these are either things he won’t believe apply to him or things that make him feel good).

If nothing is causing him distress and he’s not willing to try clozapine (yet, who knows what the future holds) then it’s about learning to live with the symptoms unfortunately (unfortunately for you… he may not find it as upsetting if the delusions and voices are positive)

I hope things improve for you both.

Great post above.

As regards finding a supported living home, are social services involved at all? I believe that the council place people in homes, but I don't know too much about the routes in. Why not google supported living for people living with schizophrenia and contact them directly to ask how they receive referrals?

I've been told he's not a candidate for Clozapine because of his history of stopping taking meds and his refusal to really accept his diagnosis. He doesn't want the voices to stop, he is busy saving the world, working with M15, only he can save the planet. It's so sad, he was a bit of an eco warrior in his early 20's, worked on lots of organic farms in Europe etc.

He recognises that the depot allows him more control over his life, and he is able to have more normal conversations- but it's so hard for the rest of us because we can have a lovely, normal, afternoon, and then when he thinks the time is right he begins to deliver a monologue about saving the world through his (unwritten) novel supported by princess Beatrice - who will divorce her husband to marry him.

I will do that, thanks.

After the last section (suicide attempt) nearly 3yrs ago, there was some talk about supported accommodation- but we were then told he didn't qualify. He was in a reasonably good place at that point and found himself the room in the HMO, which might be why he didn't hit any priority list.

I have to say I think my son lacks insight so would heavily resist any interference with his living situation. I hope your son reacts in a more positive way.

I’m dealing with a sister who is psychotic and sectioned in the past…I find it all so draining, upsetting, stressful. I must be a cow too…totally understand where you’re coming from.

It's tough isn't it - dreading the phone call from them because you never know how they are going to be when you answer. Ds is now back on full dose depot so is more able to engage normally most of the time - but evidently his brother had a tough time a few days ago when he saw him. I hate the effect it's having on his siblings. I hope you have support @Hattie888 x