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Husband has schizophrenia, need support. - Carers UK Forum

Husband has schizophrenia, need support.

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Hı, I'm new to this.. I'm desperately hoping to find anyone who is living with a partner/ family member suffering with schizophrenia for advice and support. My husband after 20 years of a relative stable life suffered a relapse in his condition earlier this year.. with 2 admissions to hospital and a suicide attempt it's been a horrendous year. After 3 different medication trials he has just started on clozapine. I'm anxious and so stressed that this is the last option and if his symptoms do not improve we could be living with his 'unwell ' state for the rest of his life. I know it's hard for him to live with his paranoia but I don't think I can cope with a lifetime of his unwell state. I have 2 kids that I need to put first. I really need to communicate with someone who knows what I'm going through.
Hi Emma
I just wanted to say welcome and explain that due to some technical problems we've not got as many posters as usual, so just in case no one 'specialised' pops in, may I suggest you put 'schizophrenia 'in our search box and read through some past posts and threads? You might want to check outt he 'Mental Health' section too.

I'm sure people in the same boat will be along, it might not be immediately though.

Others of us can be of help to you as a carer, lots of our problems will be similar.

What do you think your most immediate issues are? I'm guessing its the emotional side, the anger, the guilt, the frustration, the lonlieness perhaps?

Emma - do you have any idea why he relapsed? (If you look in the mental health section, for example, another poster is saying her father has relapsed as he'd stopped his meds!). If it IS because your husband has stopped his meds, is there a reason for him stopping? If he hasn't, how come they aren't working any longer? If he's been managing without meds, then what do you think might have triggered the relapse?

I quite agree that your children must come first, that is so in any marriage under stress. I also say that because I was raised by a mum with paranoid schizophrenia, so I do know the toll it takes on the children. (She loved us to pieces, but was highly unpredictable in her behaviour)

What are the doctors saying about your husband's relapse?

I agree that IF, which I hope it will not come to, his relapse seems to be 'permanent' that you MAY then be looking at, at the very least, separating, so as your children get a 'quiet life' with you, rather than what is, now, a very troubled life all round. I'm not in the least surrised you have anxiety problems!

I second the suggestion to look in on the MH section here on the forum, as, sadly, you are not alone in dealing with schizophrenia in the family.
Thank you Mrs A I will do as you suggested.

Thank you Jenny. My husband relapsed due to reducing then stopping his medication. He was on Risperodone for nearly 20 years. In hospital they put him back on it but after 2 month's he showed only a 15-20 % improvement. Doctors think he built up a resistance to the medication taking it at such a low dose. He tried haliperodol and also quetipine. It's a horrible illness.

How is your mother?

Sorry to hear about your husband’s relapse, I completely understand what you are going through. My adult son has schizophrenia- it is a terrible illness but can be controlled with antipsychotics. Clozapine has a good reputation I hope it works for your husband. I think people have relapses ... the fact that your husband was ok (ish) for 20 Years would seem to indicate he will get better, the illness seems to ebb and flow.

The paranoia is so wearing and frustrating. There is a lot of good detailed information on sites such as Schizophrenia.com. It is American so refers to the health system in the US. It has good advice eg “60 tips on dealing with a person with schizophrenia” there is also Mind and Rethink in UK.

I hope things improve. Let me know if you want to discuss any other aspects, my son has been on several APs and is now on Quetiapine but it’s not as effective as Risperidone but he wanted to come off that because of tremor and feeling sedated he was on 400 then 300 mgs. Before that we tried Aripiprazole and Olanzapine, they didnt suit him.
Best wishes
Emma, do you have any idea why your husband stopped his meds though? What is behind my question is whether he made a 'sane' (hope it's OK to use that term, I mean 'non-influenced by the mental effects of the schizophrenia') decision, eg, one that was based on the meds causing unendurable side effects etc, or that he felt they were declining in efficacy so stopped them altogether, or whether it was a decision 'made' by 'his schizophrenia'? I know it's a tricky business, sometimes, trying to work out where/who the 'real' person is 'irrespective' of the schizophrenia, but, as grimly you probably are well, well aware of one the THE major problems in treating ANY form of MH at all is the 'paradox' that sometimes the person WITH the MH does not think they have it! So if they don't have MH, their MH-logic goes, why take any meds? (which can also, of course, sigh, be 'part of the plot against them'....see below re my mother!)

So, I guess, the real question I was asking is - do you think the schizophrenia itself is WORSENING intrinsically, with the effect that either the drugs are losing their efficacy as in 'simply not powerful enough to counter a worsening schizophrenia' or that the 'schizophrenic self' is rejecting the need for them, because that 'schizophrenic self' has become more dominant as it strengthens 'inside his mind'.

I apologise if my terminology is clumsy, but in a way a lot of the language used about all MH is 'metaphorical' simply because we know so very little about the 'real mind' that any of us possess, and 'why it can go wrong' and what it is that is going wrong when it does go wrong! All we can say for certain is that the behaviours of those with MH are 'different' from those we say 'don't have MH' of any kind.. (I appreciate this can lead into the tricky waters of 'anti-psychiatry' where the differences between 'normal' and 'abnormal' are 'reversible' and mere 'social constructs' - or even 'familial constructs', where one member of the family is cast as the 'mentally ill' one, in order to allow the other members of the family to have their own 'mental illnesses' without so being labelled)

(All that said, I suspect the 'anti-psychiatry' argument, even if valid at all (???) really only applies to 'affective mental illnesses' such as depression and anxiety, which are about mood and emotions, rather than 'cognitive mental illnesses' such as schizophrenia, where the patient's ability to distingjuish 'reality' from 'unreality' is at stake.)

Anyway, back to the problem in hand, how best to enable your husband to have a 'happy life' and therefore his family as well....

You kindly asked after my mother - she is now long, long gone (over a quarter of a century), and during her lifetime she was someone who constantly rejected any form of medication (it was 'part of the plot against her' - "They want to shut me up and stop me spilling the beans about them! I know what they are up to, and I have to give witness statements about it when they are finally rounded up and prosecuted!" etc etc etc)(I do wonder, as an aside, what paranoid schizophrenics were paranoid about before society developed detective stories, spy novels etc etc - and these days, of course, with the cyberworld to be fearful of, that paranoia has even more to feed on, sigh).

Also, in those days, there was far less available for treatment - even getting a diagnosis was difficult, and officially she never had one. She was just 'mentally ill' and her only medication was heavy-duty tranquillisers - she did take them for a while and was a zombie so I recall, and came off them again.

If there is any comfort for you in her story it is that as she grew older, she genuinely did become less paranoid. It sort of 'faded from her mind'. I put this down to the fact that her life got 'less stressfull'. She was more looked after by her son and me, had fewer responsibilities, and generally 'calmed down' a lot. I think there is also research to indicate that schizophrenia can 'fade with age' and the victims find a peace of mind in old age that is denied them when the paranoia is at its height tormenting them.

It is such a mysterious illness, and I suspect we are only just beginning to understand what it is in the mind/brain relationship that can result in this deeply unhappy condition.
Hi Emma

My son has been on Olanzapine and Quetiapine and latterly on injections of Zuclopenthixol. His illness was well controlled with Clozapine, indeed it is considered the 'gold standard' of medication. He could not tolerate the side effects but many people manage to take it, sometimes in conjunction with medication to control unwanted effects. Users have regular blood tests as it affects white blood cells, but these become routine and the intervals between them longer with time.

Many people benefit from talking therapy, too.

Unfortunately my son has no 'insight' into his illness. He doesn't really think he is ill at all, so he discontinues medication unless he is on a community treatment order (when he is taken back to hospital if he doesn't comply).

I guess I'm echoing Jenny's question - does your husband recognise that he has schizophrenia? That is half the battle.

I just hope that one day someone will invent a better antipsychotic. Who knows?

Wishing you all the best in difficult circumstances.

PS I have replied to your PM (I hope, I haven't quite got the hang of PMs......)
Thank you Lilac, jenny & starfish

My husband was on Risperdone for many years. In answer to Jenny''s question he was on 6mg and felt they were making him drowsy so he started taking half a tablet (3mg) .. he had a review with a doctor who he told was doing this because of drowsiness , doc then reduced dose to 2mg ( don't get me started on this!!) This was now obviously not enough and over time he started to feel unwell but because he has zero insight into his illness he looked for other medication to help ease his symptoms like lorazapam, xanax and tremadol. Then stopped taking Risperdone all together making things come to a head where he was sectioned in March.

Doctors think because he was on such a low dose for a long time he has built a resistant to Risperdone. That's why it's not working this time round.

So far on Clozapine side effects not too bad but still highly paranoid.
Jenny - like your mother he is suspicious of a conspiracy against him and won't let the crisis team come to the house. Sometimes he is very rude to them which is not like his character at all.

LILAC - is your son stable currently?

Some days I walk around Tesco looking at people going about 'normal' life and want to scream out loud "DO YOU KNOW WHAT I'M GOING THROUGH " !! Does anyone else feel like this?
Then I feel guilty. . I think my husband is the one with illness and there are so many people in worse situation's than me!
I just want to go back to normal boring life!
Oh, Emma, 'normal' is that blue-bird of happiness that we don't know we've got until it flies away (or is shot down.....)

I do know what you mean by that heartfelt plea - in my case it's different, not in respect of my mother (now long gone as I said) but that I am a cancer widow. I too go round the supermarket seeing 'normal people' who simply have 'no clue' about how bad life can get for all sorts of reasons (that said, who knows what they are enduring themselves?) (Sometimes I do wonder whether there are ANY 'normal people' at all!!!!!)

(My own pet bugbear, I have to say, is middle aged women like me who are 'throwing away' perfectly good husbands as they are bored of them, or the husband's had a passing fling, or whatever....they yearn to 'recapture' their youth or whatever it is that drives them to divorce.....but try living on your own FOR EVER and the joys of 'singleton-status' palls. I'm sitting this on the sofa on my own on a Saturday night, looking at the space my husband used to sit in, and it's empty, empty, empty.)

(OK, bit mean of mean to blame the divorcing women - far more get 'dumped and abandoned' by philandering hubbies off to recapture their youth with some female half their age....sigh sigh sigh)
It sounds like that doc didn't realise your husband had ALREADY reduced his prescribed dosage in half! Not good.

I'm sorry your husband has no insight into the nature of his condition, but I suppose in a way that is 'part of the schizophrenia' - as I say, it is SO frustrating when the meds, and medical response (eg the crisis team) are seen as part of the conspiracy,

Sectioning is obviously traumatic, but it can, as Starfish vividly describes, be the only way to 'cut the Gordion knot' of denial and non-treatment.

I do hope the new meds do 'take', and that the situation eases as they 'calm' his fears.