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Sister in PICU - please reassure me...

(41 Posts)
ZipIt Wed 28-Aug-13 10:51:13

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.

ZipIt Wed 28-Aug-13 10:59:42

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

mignonette Wed 28-Aug-13 11:03:14

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?

ZipIt Wed 28-Aug-13 11:08:39

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.

ZipIt Wed 28-Aug-13 11:13:45

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).

ZipIt Wed 28-Aug-13 11:17:52

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. sad ).

ZipIt Wed 28-Aug-13 11:18:50

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

ZipIt Wed 28-Aug-13 11:37:45

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.

ZipIt Wed 28-Aug-13 11:38:19

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

mignonette Wed 28-Aug-13 13:26:56

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.

mignonette Wed 28-Aug-13 13:28:23

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

ZipIt Wed 28-Aug-13 13:42:33

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.

mignonette Wed 28-Aug-13 13:50:00

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.

ZipIt Wed 28-Aug-13 18:07:26

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.

mignonette Wed 28-Aug-13 18:40:27

Good to hear that Zip. Good luck.

ZipIt Fri 30-Aug-13 19:47:07

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

mignonette Fri 30-Aug-13 21:37:22

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.

ZipIt Sun 01-Sep-13 09:09:43

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.

mignonette Sun 01-Sep-13 18:23:44

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.

ZipIt Mon 02-Sep-13 20:22:22

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 sad

mignonette Mon 02-Sep-13 21:03:44

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.

ZipIt Tue 03-Sep-13 10:19:00

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! thanks

ZipIt Tue 03-Sep-13 10:21:44

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).

mignonette Tue 03-Sep-13 16:58:12

Good to hear that Zip.

mycatunderstandsme Tue 03-Sep-13 21:41:26

Hi Zipit. I posted on here recently about my 17 year old daughter.
She spent 6 months in hospital this year with a severe psychotic episode. She deteriorated so much in hospital I did not believe there was any hope of her ever living in society again. Basically I thought she'd be permanently hospitalised.
I feel she was left on an ineffective medication for far too long but once her meds were changed and she started a new drug the change in her was dramatic.
She was discharged end of July and she is virtually back to how she was before just maybe slightly less confident. She is going back to school tomorrow to restart her a levels.
So really there is still a lot of hope. I hope you are OK. I have found it very hard and still feel traumatised by it all.

mycatunderstandsme Tue 03-Sep-13 21:52:27

Also Zipit you asked whether somebody retains the odd ideas. My DD is now able to talk about her beliefs and knows absolutely that they were not true she can even joke about it. When she was ill I did not believe she'd ever give them up.
She was also very zombie like and overmedicated for a while but the doses have been gradually reduced as she recovers and as I said she's almost back to how she was before.
I do hope this helps. Xx

ZipIt Tue 03-Sep-13 22:12:47

mycatunderstandsme, I'm so sorry to hear that your daughter and you have had such a difficult year (understatement). It's fantastic to hear that she's better, and going back to school. That must be such an achievement for you both. I'm not surprised you still feel traumatised by it, especially after it seeming to you at one stage like she might not get better.

Thank you so much for posting. It's so fantastic to hear such a positive story.

Do you mind my asking what meds your DD was (is?) taking? My DSis is on an old-style antipsychotic (and lots of sedatives, etc.) after some of the more modern ones didn't seem to be working.

Thank you again for posting, and massive well done (is this the right phrase?) for getting through the last few months thanks

mycatunderstandsme Tue 03-Sep-13 22:33:00

My DD started on quetiapine( a newer atypical AP) and was on it for 3 months and it didn't work.. They tried adding lithium after 2 months but it was only a low dose of lithium and she seemed to switch into depression after that was added. Her delusions changed at that time and she seemed to get worse. She was started on haloperidol as a temporary measure as she was so agitated and that worked for her.
They didn't want her to stay on haloperidol so she started olanzapine(an atypical AP) and it worked really well. she is still on lithium also. The effect of the olanzapine was obvious from the first day and she was
free of the delusions after 2 weeks or so.
There was some confusion over my DDs diagnosis which was originally thought to be schizoaffective but the final diagnosis given was bipolar with psychosis.
She has experienced most of the side effects that olanzapine can give you but it really works!
We are trying to manage her weight by calorie counting and it does work but requires will power! Fortunately she was slim to start with but has gained over a stone.
It sounds like they are trying lots of things to get your sister well soon which is good.

ZipIt Thu 05-Sep-13 19:56:21

Thank you again mycat. It's really helpful to hear about the range of old and new antipsychotics/mood stabiliser others have tried (especially when it's led ultimately to a good outcome like your DD's!). Hope things are going well so far with the return to school?

Things appear to be changing for DSis a bit now. I think they've been able to reduce the sedation slightly, and the more lucid moments seem to be more frequent. I know it's a long road ahead, but I'm feeling more hopeful.
Thank you all again for listening to me and for being so very kind and helpful.

mycatunderstandsme Fri 06-Sep-13 10:33:36

Glad to hear things are going in the right direction Zipit. My DD is really enjoying being back at school and going to a party tonight but only time will tell whether she can function as well as before.

She had her dose of Olanzapine reduced again last week and her personality is now there all the time whereas it was only there as the drug was wearing off before.

I know with DD that until she started the Olanzapine she had some lucid moments but very rarely and they were never sustained so I'd get my hopes up only for them to come crashing down again the next time I saw her.

Your sis is lucky to have you to support her. The chance of her recovering from this episode is really very high if you look at the statistics but it is hard to believe it when they are so ill.

ZipIt Tue 24-Sep-13 16:22:20

Hi mignonette, Frat and mycats (if you're still around). Just wanted to thank you again for your messages - they were so helpful to me.
DSis is still unwell and under section but is at least now on an open ward, so there's progress in many ways.

mycats how are things? Hope your DD is still enjoying being back at school. I know it's a while ago now but how did the party go?

mycatunderstandsme Tue 24-Sep-13 17:44:56

Hi Zipit,
I was wondering how your sis was. Glad things seem to be moving in the right direction-these things do seem to take a long time to recover from.

My DD is pretty much back to her old self now apart from being very tired. She is back to her old hobbies, talking about her hopes for the future and has been to a party every weekend since she went back to school!

Fingers crossed she stays this way.

I really hope your Dsis has a full recovery too.

ZipIt Fri 27-Sep-13 11:16:30

Hi Mycat. Thanks for the reply. Sorry to take a while to get back to you - sometimes only get to use MN when at work (don't tell my boss....).

That's such wonderful news about your DD - I'm so happy for you both that things are going so well. The tiredness sounds very understandable (and almost inevitable for a while?). Must be fab to see her getting back into all her old hobbies, etc., and as for going to parties - to me that sounds like it speaks volumes about how well she's doing.

Does she get some ongoing psychological support?

mycatunderstandsme Fri 27-Sep-13 20:39:27

Hi again Zipit. My DD is with the early intervention in psychosis team who see her weekly but don't really offer psychological support. They are checking she doesn't have any symptoms I think which I guess would be more important if you lived alone.

Because her diagnosis is bipolar the psychiatrists think it just needs treating medically. I actually feel she would benefit from seeing a psychologist as she does have other issues in the background(we adopted her at age 7) We have asked my DD if she would like to see somebody privately but she is quite resistant and wants to move on with her life so we have left it for now.
The tiredness is a major issue and is probably a side effect of her meds. Not sure how it will go when the work piles up at school but will have to see how it goes.
Please keep me updated on your sis. Thinking of you. It is so hard.

ZipIt Thu 03-Oct-13 11:05:38

Hi again MyCat. Hope things are going well with your DD this week.
I had assumed that early intervention would provide psychological as well as medical input, so it's interesting to hear that that's not necessarily the case. Having now done a bit of reading around it in relation to my sister, I think most of these EI teams are supposed to provide specialist psychological therapies as well as medical management, so it might be worth pushing for if you think it would be useful. I don't know the details, though, so I might be talking nonsense (in which case I apologise!).

They're saying that it still seems likely that it'll be a long time before DSis will be able to leave hospital. She's starting to seem pretty institutionalised now. I know it's still relatively early days, but it seems to be taking forever. One foot in front of the other...

mycatunderstandsme Sat 05-Oct-13 21:08:55

Hi Zipit. I think they do become very institutionalised in hospital. My DD was allowed home leave whenever she wanted really as she was there voluntarily but she refused to come home as some of her delusions were about the house and that was so hard for us. She said she was never coming back and alternative accommodation had been discussed.
As soon as she started getting better she changed her mind and wanted to be back at home and in fact couldn't wait to be discharged. They really took their time discharging her to make sure she could cope. She came home 5 days a week and spent the other 2 days in hospital for at least 6 weeks before she came home for good. I guess that must be normal for mental health wards but I was quite surprised they kept the bed for her when she was at home!
Still thinking of you.
Mycat.

ZipIt Mon 21-Oct-13 12:20:21

Hello mycat.
Sorry again for the long delay. I hope things are going well? Is it half term this week where you are?

It's been full-on hectic here. DSis was discharged last week and is staying with another relative of ours, where it's very quiet and with predictable routines. She's seeing her DS again for short periods which has been very hard for them both. She is still very visibly unwell, but things do appear to be settling. It's very hard not knowing how full a recovery she'll make (no one will make any predictions). I think she's pleased to be out of hospital, but it's hard to tell.

Anyway, hope all's still going well with you and your DD. How is the tiredness now?

mycatunderstandsme Sat 26-Oct-13 21:22:28

Hi Zipit,
Glad to hear your sis is out of hospital. It sounds like things are different with adults as my DD was not fully herself but not unwell when she was discharged ie she was not showing any symptoms of illness. It did take a good while for her to get back to normal which is very frustrating but it may well happen for your sis. Thinking about it it must have been at least 8-9 months from her admission to hospital and everyone was amazed at the speed of my DD's recovery once the medication actually worked! DD is less drowsy now but still sleeps more than usual-she always did sleep a lot though and I think it almost seems to be a reaction to stress.
Things are still Ok here but my DD has the usual teenage ups and downs and it's hard not to think she's getting ill again especially as we think this is the time of year it all started.
It is great that you are there for your sis. We do not have any family support as we live a long way away from all our relatives and they are not particularly willing to help. We have not had a break from DD and feel we can't leave her on her own overnight yet even though the professionals have said they think she'd be fine.
Best wishes to you,
Mycat x

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