Son with schizophrenia deteriorating

For issues specific to caring for someone with mental ill health.
Following my last somewhat upbeat message I find out today that they have cancelled my son’s appointment on 18th - this is the third appointment they’ve cancelled, next one is now on January 19th. I’m going to ring them on Monday and ask why. Not sure who to complain to as PALS is for hospitals I guess.

Now feeling hopeless and helpless as no one gives a **** about my son battling with this terrible illness (included in the WHO’s list of ten most debilitating diseases). My son is very depressed now.

Wondering whether it would be worth going private though it would obviously be very expensive plus you have to purchase the drugs at full cost I believe. Does anyone know?

Re the Quetiapine he is back up to 300mgs but as others have reported it isn’t very effective, don’t think my son would try Clozapine because of possible health risks and he wouldn’t want to have a blood test every week I’m sure.
Oh how infuriating! I'm all too familiar with endlessly delayed appointments. It's the complete frustration of knowing what's needed but being unable to access it.

I also understand that awful feeling as things plunge downhill again, just when you thought it was going to work out......

I'm sure PALS deal with mental health issues as well as physical.

I can't answer your question about cost of drugs I'm afraid. Quetiapine is long out of patent, so perhaps not that expensive? I have a dim memory of my mum having a private consultation for eczema but then getting the treatment on NHS prescription. I'm sure a private psychiatric provider such as Cygnet would be only too pleased to explain it if you phone.

Re the blood tests, it was weekly only at first then dropped to monthly.

Sorry not to be more help. Wishing you all the best.
Thanks StarFish for your reply I will ring the CMHT then maybe PALS people on Monday- it is a bad message to send to someone (your appointment has been cancelled) when they already feel no one cares...

As you say it’s all about the medication and maybe time to try a new one - the reason we chose Quetiapine is because it is least likely to cause tardive dyskenia... which my son has said he will not put up with, has said he’d rather not be here. Even as a child he was terribly self-concious.

Re moving to be nearer him you have said what my friends say ie don’t. I have asked him to consider moving near me but I live in a rural spot and he’s an urbanite he said. Cardiff is the nearest city to here but don’t think it would be a good idea to move straight to a city he doesn’t know. I’ll suggest he moves near me to start with. He was on the phone yesterday saying he never sees anyone, he can’t take anymore etc and of course rejected everything I suggested. I pointed this out. I know I’m not ‘supposed’ to be suggesting things but what else can you say...

Going to my GP next week not sure whether to ask for an AD, l was on Sertraline for 3 months but it made me feel worse really and more tired. All this fake Christmassy stuff is doing my head in - for so many people it's not a happy time of year.

Sorry to moan on! I can’t wait for the turn of the year and the sun to return - as from today the sunsets don’t get any earlier.

I have written an account of my son’s psychotic episode four years ago and it won second prize in this year’s CarersUK writing competition much to my amazement. You can find it on the website. The story is called Syndrome and I used a pseudonym because was terrified my son would find out and go ballistic. Writing is my thing, it’s what keeps me sane (ish).

Hope all goes well for you and your son.
xxx
Sorry, digressing from your post Lilac, how are you today?
Hi Lilac
I too would suggest you stay living where you have friends, a social life and work ( or any of them). It another sad indictment of our broken mental health system that it is likely your son may suddenly to moved to anywhere in the country if he needs inpatient treatment or specialised or supported housing at any point.

Are you remembering to try all the non-drug mood lifters for yourself?. Everything from going out for a walk to counselling? Personally I've found making contact with others in similar situation helps me put things in perspective rather than getting caught up in his spirals, so much that it intrudes into all aspects of your life.

Easy to say I know, not so easy to do, especially when he's in a down phase. Just hang on in three xxx
My son was on the phone again this evening, kept talking about people taking things from his room ... and then putting them back again, he think various organisations have information about him and are denying it/fobbing him off/winding him up. So the paranoia is worse despite going back to 300mgs Quetiapine.

Was hoping this could be sorted out (as much as it ever can be) at the appointment on 18th, now they have cancelled that. Going to ring the CMHT tomorrow about that, hope I wont get upset or angry. Got really angry this evening while waiting in a “queue” on the phone for a **** car insurance query. I take note of your comment Mrs A to try not to get involved in his spirals but I spend every minute of every day thinking about his problems (though I can switch off more in the evenings in front of the telly). It’s driving me mad, this has been the worst year for me, he’s lost all his jobs, had a friend for a few weeks then didn’t like him ... i started out so hopeful 9 years ago (that he could get back to a normal life) and now I just feel battered and beaten by the disease and harangued and berated by him ... I know he cant help it (mainly) I do stand up for myself or curtail the conversation. There are other people on here who have worse problems I know so feel a bit bad about complaining. I see a therapist and I’ve done an online CBT course. I’ve got lots of activities, some friends I can talk to but when I wake up in the morning I feel I’m in hell and this is the worst torture ever, to have your child suffer in this way and to feel the system doesn’t care what with repeatedly cancelling appointments. Sorry to go on.
Stop saying "I know others have it worse.." because that is pointless, and in any case, your situation IS far worse than many others. Does someone keep drip feeding that phrase to you?
http://www.schizophrenia.com/family/60tip.html
http://www.cmhnetwork.org/media-center/ ... izophrenia
Hi Lilac
I so want to help but with little experience myself I searched the internet
The first may or may not help. Hopefully one or 2 of the items will resonate with you.
The second is a blog by another Mum and author who you may relate to

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MrsA
Thanks Mrs A, I am familiar with the 60 tips and will look at the other blog.

Bowlingbun- yes you are right, someone was dripfeeding me my feelings aren’t worthy of being heard. I am working on it.

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Deteriorating further ... thinks someone nearly pulled a knife on him... managed to get an appointment today. He’s accused people in his house of stealing things, they've called him paranoid. It cant be long before he gets booted out of there. I don’t want him in my house ranting and raving and breaking things. It wouldn’t be safe anyway to drive 140 miles up there with him shouting etc. Spoken to MIND, legal advice re housing dont think hes bad enough to qualify for LA supported houses,

Will see what psychiatrist says. Suspect son has reduced his dose, the Quetiapine doesn’t work well anyway. Been awake dince 01.50 wondering what's going to happen. On brink of being sectioned I think (him) me just had enough, 9 years of it.
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