Sister in PICU - please reassure me...

[ZipIt]

My lovely little sister (age 22) is having a severe psychotic episode, seemingly out of nowhere. I'm currently looking after her 1-year-old DS (who is delightful, and seems happy to be here with his cousins, although obviously he must miss his mum). She was sectioned 4 weeks ago and there's still no improvement. Is this an unusually long time to be psychotic? Will she get better? I hate that she's suffering this, I feel so worried for her DS, and, on a selfish note, I miss her so much.

I've realised there's an ambiguity in the title here - I mean Psychiatric Intensive Care Unit (not paediatric).

I think you have to start to make plans for having to look after her child for quite some time yet. She may suddenly respond but four weeks is a long time for their to be no improvement at all and the process can be a slow one w/ periods of day long home leave rising to overnight and weekend leave before they will consider discharging her. Make an appointment to discuss this w/ her care team or ask to attend ward round. They should be reviewing the treatment plan after no improvement. What section is she under?

Thank you mignonette. Obviously we have social workers involved, etc., although because they're happy that DNephew is happy and well, they've been largely leaving us to it. I will of course look after him as long as is needed. She's under a section 2 I think(?). I believe they're renewing it or something(?), as she's in no fit state to go anywhere yet. I have no experience of any of this stuff, so feel so clueless. Also with working and looking after DNephew and my own 2 DC, I haven't had much chance to educate myself.

Something similar happened to a close family member of mine (no DC involved though). It was an awful time, they were in PICU for about 2 months and I remember that feeling of there just being no improvement. However they did eventually get better surprisingly rapidly - were on a nasty cocktail of drugs for a while, but 2 years later you wouldn't know there'd been anything wrong (still on antipsychotics). As mignonette says, the coming-out-of-hospital process is slow and she will need support.

Thinking of you and hoping your DSis responds soon - I know it is very frightening for the patient's family.

FraterculaArctica - thank you. That is such an inspiring story to hear (although I am of course very sorry you and your family have been through this. It is indeed terrifying).

Also, mignonette, I do know that they are reviewing the treatment plan regularly. She has been on a number of different antipsychotics, sedatives and hypnotics. They have worked at times to sedate her and make her behaviour more manageable, but only at levels which make her massively sedated (drooling, etc. ).

It's so horrid to see her this way. I know this might sound melodramatic, but sometimes it feels like we've truly lost her.

You haven't lost her. I remember thinking at the time it seemed impossible that my relative would ever have any quality-of-life again - since then they have got married, bought a house, and got a fab professional job.

The strong sedatives are frightening, but if our experience is typical, then once your sister has stabilised and come back to herself, they'll be able to reduce these to a more normal level quite quickly. At this stage it's still about pretty hard-hitting treatment

Thank you so much, FraterculaArctica, that is so good to hear. The last few weeks have been so busy I don't feel I've had time to think about it that much, but I'm struggling a bit today.

DSis is the person I'd usually talk about these things with!

If she is on a section (2) this is a 28 day assessment detention, is non renewable and is either discharged at the end of the 28 days or converted to a section (3) which has an initial 6 month length for the purpose of treatment. A Section 2 can be discharged at any time by the RC (Responsible Clinician) if they feel your sister no longer is deemed sectionable under the laws governing the section. A section (3) can only be made if it is deemed that there is an appropriate treatment available within the hospital to treat and unlike a 2 can be challenged by the nearest relative meaning the hospital must apply for an order displacing the nearest relative. Section (3) can be renewed and when your sister is ready for some home leave they will attach a Section (17) which gives her legal permission to leave the unit. However the (17) should clearly state where she is on leave to initially.

Ask them what anti side effect medication she is being prescribed and ask to see the charts to ensure it is being administered regularly because your sister will be in no condition to remember to ask for it. The drooling and other side effects termed EPSE's (Extra Pyramidal Side Effects) can and should be controlled. The best person to ask about these is the pharmacist attached to the unit (they will visit each day to check stock, charts and orders or speak privately to any chemist pharmacist. They are so much more knowledgeable than Psychiatrists and nurses (and I am a RMN). .

I know how frightening it is for you and how awful it is to see your sister in such a state. It will improve but psychiatry is such an imprecise science because people and the brain are just not the same as say, an inflamed appendix and it can take time to get the meds and other treatments right.

All that matters now for her is eating, sleeping and fluids. All treatment needs to be geared towards is safeguarding her from harm, maintaining functions essential for life and controlling her psychosis. Make sure they answer all your questions and if the sight of her is very distressing, it is not a bad thing to limit your visits to her to very short periods or not at all until she is over the florid stage. Nobody will think bad of you for that.

The MIND website will tell you all you need to know in the main here. Please contact them for support for yourself.

Thank you very much mignonette - it is so useful to have all that explained so well. I feel much clearer about it all. I think, then, that they must be converting to Section 3 but will double-check the details. I will also ask about the control of side-effects. Are meds sometimes not given as regularly as they should be in these units, then?
I also really appreciate the comment about not feeling too bad about not visiting much. I have been trying to, but sometimes the staff at the unit have said it's not OK (very disinhibited behaviour) and sometimes I've just not been able to (work, kids, etc). One possible sign of improvement(?) is that she does seem to be sleeping for more of the time, although I suppose that's the effects of the sedatives.
Thanks again.

Zip Sadly some units may be a little lax w/ the anti side effect medication just as some wards can be lax w/ pain medication. They need to be proactive not reactive. For example if it is known that an antipsychotic triggers EPSES's in most patients they need to be watchful, Px it the moment they appear and then re-administer the medication regularly.

Sleep is good. They should be monitoring her very closely (even 1 to 1) and keeping an eye on her blood pressure and heartrate too. Check that is being done and that she has had bloods drawn for hormonal levels, any infections and other metabolic conditions. Physical health status can sometimes get a little lost but the physical causes must be ruled out first.

Yes, restrict your visits but keep in touch w/ the nurses. When she is more lucid that is when you will need to see her more often and it may be very tiring for you with everything else on your plate. Have you checked benefits as you may get Carers Allowance? The unit should have a patient welfare officer attached so ask for an appointment and they'll help you w/ your sisters finances, any legal or work stuff, getting medical certificates and benefits etc.

I wish you well and your sister too and will keep an eye on this thread in case you have more questions.

Thanks again mignonette. I'm going to call the ward later armed with a lot more knowledge. Everyone who works there has seemed lovely, so I do feel I can ask the things I need to ask.

Good to hear that Zip. Good luck.

Saw Dsis again this morning, and she seems so sad. Medication is giving her a tremor and making her walk like a zombie. She doesn't look like herself at all. She spoke monosyllabically. What she said was heartbreaking. I know this is probably all part of the process but it's so horrid to see how bad she must be feeling. I don't think I'm asking for any sort of response really, just needed to say it somewhere.

mignonette clearly has much more specialist knowledge of these things than me, but the tremor and zombie-walk sound familiar. Zombieness is probably the sedatives, it's scary to see how much someone can be slowed down and still be alive isn't it? But hopefully when she's well and truly calmed down they'll be able to reduce these. The tremor is likely to be a side-effect of the anti-psychotics I think?

Do you want to share the sort of things she's saying, is she very obsessed with a few topics? My relative talked incessantly about God and religion (our whole family is atheist). We had to have the same conversations with them over and over again, it got very tedious. There did come a point though, about the same time as the sedatives really started working, when they started going on about their hobby horses with less and less conviction and it became easier to start talking to them about the real world.

Don't feel you have to share if it's not helpful. How are you doing with your DC and DN, it must be taking a big emotional toll? I hope you have other family around for support x

Zipit Saddened for you and your Sis. She has endured a tremendous assault upon her body and mind. Antipsychotic medication+hypnotics (sleepers)+anxiolytics (Lorazepam etc) will all meld together and result in this typical presentation I am afraid.

Sadly as the fog of psychosis starts to lift and the patient begins to have some insight, they will have these awful feelings and say things that are upsetting and worrying. The realisation of what has happened is termed 'Crisis of Insight' (and though typically applied to patients who were on the older style antipsychotics and who improved in insight dramatically ob new ones like Clozaril) it affects many patients who have had a short term episode too. The staff must be made aware of whatever she tells you especially if it contains expressed thoughts of self harm, uselessness, lack of wanting to go on...You aren't breaking her trust because a sectioned person is deemed in need of safeguarding from themselves.

Have the staff reassured and shown you that she is receiving full anti side effects meds? She will also need daily reviews of her medication too. She needs to be encouraged to keep well hydrated to assist with the excretion of broken down meds, she needs to be monitored for food intake because psychosis burns a lot of energy even though meds will cause some weight gain.

Is she self caring yet? Bathing/showering? That is a sign of progress to look for. Maybe she'd let you brush her hair or style it? Spend time w/ her in short doses, the early evenings aren't the best time as I find patients that are very ill tend to be the most agitated and confused then. If she starts to express delusions try to gently distract her w/ the here and now- focus on what she can see, the weather, a magazine picture or a hand massage if she allows you to touch her. Don't get bogged down w/ delusional stuff. She needs gentle reminders that you do not share her beliefs. "The illness you have is called psychosis. The more unwell you become, the less ill you believe yourself to be". "I'm sorry but i do not hear that voice/see those things."

But only say this if she can cope w/ it. let the staff advise you on how to talk w/ her and approach discussion of her experiences. At this early stage delusions can be what they call Fixed with a complex Delusional Framework. This term refers to all the ideas/evidence connected to the delusion. For example if she believes that she is being persecuted she may have developed complex reasons why, evidence that it is happening...Think of everything you believe in. Then think of all the 'proof' you have for why you believe in it. She may or may not have the same for her delusions. Staff will 'test'' her through talking to her as to how fixed they are.

Some terminology-

Persecutory third person delusions are as they sound- something or someone is persecuting her in her belief. An 'Idea of reference' covers things like thinking people/somebody on the TV is talking to you or about you. A delusion is a belief or sensory experience that has no external trigger/stimulus. An illusion is where you misinterpret something 'real' like a shadow becoming somebody in the corner.

Ask staff to explain all the symptoms to you. They should be doing this. After a visit, ask to speak privately w/ a nurse to debrief you. Tell them of all concerns. Make sure you speak to them away from the hullaballoo of the office/nursing station. Make them pay attention to you.

Thank you both so much for your replies, FraterculaArtica and mignonette. I was so touched to find them.
All of what you say fits so well, min. I think she is having a crisis of insight and it was a relief to hear there's a word for it. I did ask about control of side effects and they said they were working on dosages - and yesterday this side of things seemed to be much better.
Frat, Dsis thinks that there are numerous conspiracies against her, that she is being spoken to by dead historical political figures, and much else. She constantly repeats a desire to be dead herself which feels very sad.
DN and DC seem very happy (& noisy), which helps a lot. My DC are besotted with DN, and vice versa.
DN's dad is coming back from 2 months working overseas so DN may stay with him next week. I'm worried about more upheaval for DN, but know this is probably the right thing.
Thank you both so much again for reading, and for such helpful and insightful input. I appreciate it so much.

Well you know where to find us should you have any more questions. I'm sure DN will be fine. What is important is that she feels loved and secure. That is all. Present it as an illness of Mummy's, maybe an illness to do with her 'thinks' if she asks for information.

Keep reporting any suicidal ideation as the time to be vigilant is when a person begins to recover. She will settle.

Take care of yourself too.

Thanks again, min.

DN is now with D-ex-BIL. A bit unsettled initially as you might expect, but very excited to see his daddy again, and I do know he'll be very well looked after and loved there. Which, as you say, is the main (only) thing really.

Still no major improvement for DSis, and it must be so awful for her feeling so bad. She said in one of her more lucid moments that it's like some kind of truly horrendous groundhog day in there. Delusions, etc., also persist.
I'm feeling inexplicably angry. I'm furious with DH for not getting how serious this is. I'm also feeling guilty for feeling bad for myself about it, given how many millions of times worse it must be for DSis. I'm scared of losing her, and I miss her desperately, and I'm really worried she won't be the same again

You are allowed to feel bad, you know. It is bad in different ways for both of you.

She is at least, having lucid and insightful moments although yes, the price is often despair at the situation and all the feelings she describes to you.

Zipit I'll be honest with you. Many people have one really severe and acute psychotic episode and recover from it relatively unscathed. I say relatively because of course it is a traumatic event and they always have some kind of impact. There are some people though, who go on to have relapsing/remitting illness though. It is not possible to tell at this stage nor would it be ethical. What is important is to work on identifying risk factors and triggers with the person and their families as recovery commences. Let the staff guide you on this. Keep visits short, report all that she says to the staff (for her safety) and keep in close contact with them. Never keep a concern about her to yourself no matter How inconsequential or niggling a feeling it is. Always make staff aware. She will improve but it does take time.

Hi again, min. Thank you very much. That makes it all feel a little clearer. The fact that there is still some hope for relatively complete recovery helps, and also I've been reading a little about people who enjoy life even with relatively severe ongoing effects (e.g., with diagnoses of schizophrenia). So feeling more positive. She was apparently a little better last night. It's so helpful to be able to discuss it here!

Frat (if you're still about) - do you mind my asking whether your relative has retained some of the ideas they had when psychotic? Is it a case of living with the ideas, or the ideas going? Hope you don't mind such specific questions (obviously please don't answer if you'd rather not).