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Son with schizophrenia deteriorating - Carers UK Forum

Son with schizophrenia deteriorating

For issues specific to caring for someone with mental ill health.
My son who has schizophrenia has been gradually getting more and more paranoid ever since he changed his antipsychotic from Risperidone to Quetiapine this year and more especially since he reduced the dose from 300 to 200 mgs at the beginning of June. I live 140 miles away in Wales, he lives in Bournemouth. I have just come back from a 3 day visit and due to go down again on Monday but not sure I should wait that long as he’s got worse since I left him.

Over the past 4 weeks I have rung the Crisis Response team twice and the onduty mental health nurse twice but they all said they can’t do anything unless he’s a danger to himself or others. They did however bring his next appointment forward but then they cancelled it as the psychiatrist was away. We now have one for 18th December.
I know no one can help but just wanted to see if anyone else has this sort of problem... i was hoping to have a few days at home to recover before doing the journey again. I brought some of his dirty bedding back with me and had it washed at a local laundry- that was the best £7.50 I ever spent! But he hasn’t been to the laundrette for a long time now and all his clothes are now dirty- he hasn’t wanted to leave his flat because of fear of people getting into his room and stealing things... guess I’ll have to take mounds of stuff to a local laundrette and possibly buy him some new bits and pieces.

Last night he rang and said he had the depersonalisation feelings again (where your body doesn’t feel like your own and feels weird etc) so I rang the Crisis people again who said they’d emailed the CMHT last time and they should have done something like a home visit to him but it was clear from the records thst they hadn’t done so.They would email them again and advised me to also call. They thought he should have s home visit. I know my son would be furious if anyone knew he had a mental illness eg with mental health workers turning up on the doorstep but fear they already know something is wrong. He has done some damage to a chest of drawers I noticed- anger is a big problem with him when he gets ill. And he’s often ranting and raving over the phone to me though I now cut him off earlier after advice from therapist and people on this site.

Over the past few months I have been getting more and more depressed and am now crying on and off all day. Tried antidepressants but they made me feel worse, got a therapist and that helps a bit but doesn’t help with the awfulness of having your child with this terrible disease that robs them of practically everything- my son has no friends, lost two jobs this year, hasn’t had a girlfriend for ten years (he’s now 30), memory bad, problems organising things, concentrating, anger problems. Life ruined.
I wonder if I should move down to Dorset to be closer to him (my daughter lives in Dorset also) but this world mean giving up my friends and activities up here... but I feel very guilty that his life would probably be slightly better if I was around more. At the moment I go down there about once a month.

I know there’s nothing anyone can do - it just feels like no one cares about people with mental health problems despite all the lip service paid to the issue. What makes it difficult is the fact that their personality has changed, they can be not very likeable- it’s difficult to remember it’s the disease not the person.
With best wishes to all the carers out there who do such a fantastic job.
Hi Lilac
My heart goes out to you as I fear I may be in the same situation in 10 years time and I know only too well the feelings you describe.
Can I just reflect to you something that sticks out from your post? You say he would be horrified if anyone thinks he has mental illness, yet he is on antipsychotics. Why does he think he is on them? Deep down he knows.
Have you clearly voiced your concerns to him that he is experiencing a downturn and needs help. Can you perhaps get him to make the call when you are there. A call from him will carry more weight than one from you, even though it may not produce a faster appointment.

There are other hints on how to help on the Mind website
https://www.mind.org.uk/information-sup ... iE1TGiny2c

((((Big hugs)))) it is bl**dy difficult being a parent in such circumstances xxx
HI Lilac,
I live just over the border in Hampshire.
Are you aware of Dorset Reclaim? You will need to Google the place, be sure to download a map! It's on the right hand side going towards Ringwood, once you've passed Bournemouth station, but it's a maze of little streets.
It's a huge warehouse, where they have lots of good second hand stuff, furniture and bedding, available to those on benefits or a low income. I took lots of my mum's stuff there, it's all excellent quality.
So don't spend your own money without checking here first.
Thanks Mrs A and Bowlingbun for your thoughtful replies it is good to be able to voice my feelings. It often feels as though people in the ‘normal’ world don’t realise what a real problem is (no, it’s not worrying about what to get people for Christmas). How I wish that was my worst problem.

On the positive side my son did take the higher dose of Quetiapine last night and seemed very slightly better this morning though difficult to tell just from being on the phone. I will ring him later and see how he is, I’m off down there again on Sunday or Monday so will know more then. Tried to persuade him to ring the CMHT duty worker today but he adamantly refused.

Thanks for sending the link, I found it useful to read.
I am being advised to step back from my boy and do much less for him (not sure it will work btw).
What would happen if you stepped back? Is the fact you are involved and supporting enabling Crisis team to deprioritise him perhaps?. Would he be more likely to call them if he couldnt call you? Just rhetorical questions for you to ask yourself
I dont know any answers, I just know I hate every second of seeing my son's slow, slow car crash of a sad excuse for a life
I do know my boy is easier if I am calm and do not try to rush or push him into anything, but he isn't schizophrenic or on medication so not sure what help I'm being, if any, just that I know what you are feeling.
Do you do all the recommended things to look after yourself, exercise, healthy food, rest, respite, mindfulness, counselling?. It's easy when stressed or scared to forget or cut out something that actually helps
I have tried to reply to the last post from Mrs A three times but none of them have appeared - does anyone know why??
Will try again, of course that last post appeared!

Mrs A thanks for your advice, I do try and look after myself. Have discussed enabling issues with therapist but when he was last in a full blown psychotic episode he didn’t really know who he was and was catatonic at times so I need to check up on him regularly.

I know exactly what you mean about a slow car crash of a life, I am sorry to hear about your son.
Hi lilac your post struck a chord with me ad my 24 year old son is schizophrenic and is also trying to live independently. He was on Quetiapine also and he declined quite rapidly with suicide attempts and anger issues he destroyed a lit if our stuff also destroyed a door in his flat and has smashed many phones leaving him with no contact to the outside world. He has had his medication changed to Olanzapine and the difference has been amazing. He is not hearing voices now just very paranoid which I can cope with better. It must be so hard living so far from him and you will be worrying constantly. I did a free online course from future learn called caring for people with psychosis and schizophrenia and I have learned loads. Just Google future learn I'm sure u will find it helps. One major thing I learned with this illness is it's all about the correct medication and they can stop working so it might be time for your son to change his meds . I wish you all the best in this difficult situation
Hi again Lilac

The first drug my son was given was Olanzapine but it made him lethargic and overweight. On the suggestion of the mental health team he changed to Quetiapine but had a bad experience with it. He was afraid to go to sleep and took to camping on my bedroom floor. He didn't get much support and in the end he just stopped taking it, which led to a big breakdown.

At the moment he is back on injections of Zuclopenthixol once a month. He also takes daily Depakote which is primarily used for bipolar mania but seems to calm his anger down, and crucially he doesn't mind taking it as it has no immediate side effects. He has also recently moved back to his council flat, which is encouraging.

Is your son happy to comply with medication? I wonder whether he would try Clozapine (I seem to remember from your previous posts that this is a drug he hasn't tried yet).

Personally I would counsel against moving. You need to keep your support systems in place or you run the risk of going under, and being of no use at all. :cry: What is the likelihood that he could move nearer to you? Are the local police aware that your son is a vulnerable adult? Much as I hate it for the stress it causes, intervention by the police has been the most effective route to getting my son into hospital and getting the help he needs.

Best wishes xxx
Thanks Debra and Starfish for your suggestions. I have started that course on Futurelearn and am finding it very informative. Since my son has gone back up to his previous dose of Quetiapine he is a changed person - for the better I mean! So I’m feeling better now, I was in a very dark place for the previous two weeks. We have an appointment with the psychiatrist on 18th so can discuss all that’s happened.

Thanks to everyone who has posted on here - you all gave me hope.