Please help - Scared for my daughter

[Bepis]

My daughter is 18 years old but she has special needs so is a lot younger in her mind. She has suffered with anxiety for the past 5 years or so, to the point where it stopped her attending school and she had to be under CAMHS. Her anxiety was mainly around people she didn't know and new situations.

The past couple of weeks have become so difficult and I just don't know what to do or where to turn.

I noticed her hearing things and she would say to me that her stepbrother swore, or I swore etc when that never happened. That went on for a while but now she is panicking if her sister is on the phone. Her sister will talk to her boyfriend in the evening in her room (they have separate rooms) but my eldest daughter is just flat out panicking about it and refuses to go upstairs. When I finally get her into her bedroom, she will not get in bed but just sits on her bed until 7/8 in the morning.

I tried laying with her this morning so she would get some sleep and she managed an hour or 2.

She's also started putting her fingers in her ears whenever someone talks. Not in a rude way but it's become a reaction. This is within the last couple of days.

She says she can hear her sister talking on the phone at 5/6/7 in the morning despite her sister being fast asleep.

She is also zoned out (I can't think of a better way to describe it). Like when I talk, it's like she doesn't understand me. She's also started whispering instead of using her real voice and is even starting to become non-verbal.

I'm so scared, I don't know what's wrong with her and I don't understand.

I took her to the doctors today and they prescribed Sertraline. She had her first tablet tonight. This seems like more than just anxiety though.

Has anyone else experienced this? Im scared and in tears.

I’m sorry. I think I wasn’t clear in my post. I meant as hard as it is not to have your girl at home pls don’t bring her home until the authorities have done everything possible to get to the bottom of what’s going on with her health and to make provision for her. Let her coming home be something that’s in her best interests. Not something that happens because the authorities take advantage of your love for your daughter.

I still have my son at home. He’s in his 30’s. He requires 2-1 round the clock care and in order to have him at home we self fund the team of 5 full time and one part time carers needed (along with family) to enable us to be together.

Hope you get some proper support for your DD Bepis and in time there will be a package to support her staying at home or wherever it seems best for you all.

DesertRose I am glad you can keep your DS at home with support though that's a lot to fund by yourselves.

Its so difficult. I hate mine being in hospital, he hates being in hospital but the lack of services in education and health plus my cancer and then the police unnecessarily handcuffing him as school did not want him onsite sent him into a coma like state called catatonia. The only proper help was in hospital. But they are like prisons. Mine is just on his third home visit now and hope they will do discharge plan soon. He's not really much different to when he went in in September but he's out of the coma like state from being handcuffed and he can walk with a little bit of help and gesture and eat and drink most of the time. It has given us an autism diagnosis and access to the top experts in the NHS, one from Maudsley is now involved who is famous I am told. Its very wrong kids are left like this.

Found out tonight that my dd is going to be sectioned under the mental health act. She will be placed in a Learning Disability Mental Health unit. I'm heartbroken but at the same time it's best for her.

To top it all off, her consultant today started talking about how my daughter could end up being a case for the coroner and could die. Insensitive man that he is.

I can feel myself getting so angry inside at people and that's not me at all. I don't like feeling like that.

Will answer your posts now.

what was the context that this man said this to you please?

im sorry your girl is going through this.

did they say she will be going to an actual specialist unit for adult and learning difficulties. have you being informed and helped with this choice. or do they just cater to those with those struggles.make sure they dont get arounf you with langauge. there arent places calling themselves actual centres ofr people with learning difficulties.
its ok to be angry. she has been treated like shit. sorry but she has. they have allowed her to get to this stage. they have.
this is NOT on you. do not take any blame back for this. you have done nothing but keep your daughter alive. with no help.no support and a piss poor atitidue to mental health all the way through this. they literally have turned her away at every level. so yes you should be angry.
use that to get her the best treatment. and perhpas when things have settled this can be something you can channel. so a nicely worded email and round rpbin letter to mental health services.hospital.and your local councils and MPS. who knows what the fuck it will do.as parents weve all probably tried it. ubt it might help you to no youve sent what theyve done to her back at athem.youve told them what theyve done to your family by every step of this leaving her,letting her get worse and actively turning her away from serivces a few times youve called for help.

what you need now is to all feel held and supported.and to hold eacohter tight.
its going to be a fractious time getting the next steps sorted.lots of emotions im sure. so make sure it feels right for all of you.make sure they ARE doing right. you have a say here.she does too! this needs to be done what best for her. they have let her down.so they now have to go some fucking way into putting that right. they should be the ones making things better for your daughter. she deserves the best care they cna give.

There are LD specific mental health units. Not many of them but they do exist.

You have been through such a lot. Could you access some counselling for yourself? I’m not surprised that you are feeling as you do, it’s a very emotional time.

@Bepis I am so sorry for you all, yet also hope it will be for the best and you might one day look back on this as the day your fortunes turned.

I'm not a "sue the lot of them" type, but given the severity of the diagnosis if your DD is being sectioned, the GOs and anybody else caring for her before appear to have some major questions to answer. When you have the energy perhaps you could contact Healthwatch locally and give them a summary of what you have been put through.

Please do seek out care for yourself - even if you only do it so you can be strong for the family.

You are all in my thoughts.

@kateandme Apologies for taking a while to respond. Thank you for your reassurance and kind words. I feel that I keep reacting on emotions because my natural instinct is to just go into hospital, wrap her up and bring her home but that isn't necessarily the best thing for her. I panic because where she is right now (acute hospital ward) is not the right environment for her. There's too many people coming and going and I mean absolute no disrespect to the staff as they have been brilliant but they are not trained in this sort of thing (by their own admission). She needs round the clock care but they can't give that to her. She is so happy when I go to see her, I just wish I could be there with her 24/7 but it's not possible.

@Stickytoastandhoney Thank you, you are so kind. I agree mental health services are stretched across the country. The trouble we are having right now is actually finding dd a bed in a specialist LD unit. They are like gold dust. There should be way more funding for this sort of thing. You mentioned autism, and she has been screened for that and reached the threshold to be put forward for a full assessment. Unfortunately the waiting list is 12-18 months for that. You are absolutely right, as much as I want to be there every day and every night, it's just not sustainable for me. Plus I don't have my own transport and benefits are stopping due to her being in hospital which makes travel on the bus impossible. Have to rely on whenever family are available.

@DesertRose64 I have to admit that I do want to just bring her home as she isn't being cared for to the level she needs on the acute ward (no fault of the staff - they work so hard). How do you find it having careers coming in and out of your home all the time? I'm sorry you have been through this too, it's so heartbreaking to see.

@Silkierabbit Sending hugs to you with what you are also dealing with, it's soul destroying. And to be coping with cancer too, you are absolutely amazing! You sound so strong. I hate my dd being in hospital too as it's not right for her. As soon as she gets a bed in a special unit, it will benefit her but I don't know when that will be. My dd also went in a catatonic sort of state but she's not as bad now and does interact with me. I'm so glad your son is out of that state too. You mentioned about him gesturing, could he talk before all this happened? Yes, they are suspecting autism for my dd too.

@kateandme it was dds consultant on a video meeting call. He was talking to someone in the background even though he knew we were on the screen and could hear him and said something like "she needs to be somewhere else otherwise it could end up being a case for the coroner". I knew he was talking about my dd. Another nurse on the meeting said, "we can hear you you know". Then during the meeting, while he was talking directly to me, he starts telling me that because she isn't moving much, she's at risk of thrombosis which could then lead to a pulmonary embolism and then death. It's like, "why are you telling me all this?" I started crying on the meeting.

They are looking for an LD unit but they are so few and far between. Currently no beds available but I was told today that can change daily so one might become available. They are also considering home options with support but the psychiatrist feels she would not be able to give the treatment she needs with dd at home. I do feel that she isn't receiving the care she needs and I do feel she has been treated like crap to get to this point. Could have been nipped in the bud. I can hear your anger for my dd through your post and I want to thank you for caring for her even when you don't know her. Even the panel on the recent CTR meeting agreed dd had been let down.

@slamfightbrightlight There is one near me but they only have 4 beds which are all full at the moment. The manager did say someone was getting close to discharge so will have to see what happens.

@Triflenot I don't know how I'm still going if I'm honest lol. I was considering looking into counselling and seeing what options are available. I can't get a certain image out of my head when dd was in the ambulance. She was so panicked that she got to the point of nearly passing out and he eyes rolled into the back of her head and it's like she couldn't breathe. I actually thought she was dying for a split second. I can't get that image out of my mind, it's there when I close my eyes.

@scarecrow22 It is maybe something to consider down the road, regards how she has been let down. I feel it was mostly her GP who let her down, she could have intervened a lot sooner. What is Healthwatch?

The psychiatrist is recommending detaining dd but it needs the recommendation of another qualified doctor and a social worker I think and we aren't there yet. I think psychiatrist is waiting to section when a bed is available. It's all a minefield.

Thanks Bepis Hope they find a way to get your DD the help she needs quickly. Yes my DS used to be able to talk though has always been a bit selective and did not talk with certain teachers at school going back as far as nursery in like autistic shutdowns. Then about a year ago he went more mute with issues at school. They don't think they will be able to get him back talking but the Maudsley are coming out on 13th and may have ideas. He's just done 4th home visit now, all gone well but very similar state to went in.

For support for yourself, Google your area name + IAPT. That stands for Improved Access to Psychological Therapies; your area might offer self referral for counselling and/or therapy and their website might signpost you towards Carers' Support or groups.

@bepis just sending another genuine hug and to say you are doing an amazing job - everything you have done I would have too.

I have been in your shoes on a much lesser level but I think my child would have got to the same point if we hadn't eventually got on the right medication by 16 (started meds and therapy at 12) It has been hell. My darkest days.

I know I keep banging on about meds but the transformation was remarkable. I'm keeping everything crossed and dearly hoping that this intervention will get her on the right path.

Hope you have someone IRL to lean on, even just to cry on or have a bit of time out with. Everybody says it but you have to look after yourself.

Keep posting, we're all here for you and sadly, a lot of us understand a bit of what you are going through.

of course you rection is to get her and wrap her up. that only the sign of a good mum. that would be the case, and then add to that how appalling she has been treated then you want to do that ten fold. to just makes things right.

you also dont need to keep making excuses for some of the nurses and or treatment.saying its not their fualt or theyve been excelent. yes kind of. but no they have all collectively let her down.and often they just dont do enough to look after those suffering with mental illness. they dont know or learn how to behave or tak or look after omeone with mental illness and it isnt acceptable. its just isnt.
yes there are brilliant nurses just rying their best. but im so sick of their best being what accepted. people need to do more for those suffering. and it will have to come from the inside too. from those taking it upon themseves to learn to be and behave and care better.
it wouldnt be accepted for any other set of illness or problems.

keep asking about these places on the units. make sure you keep notes of questions you want ansering on her care etc. how they will plan to look after her etc, its needs to be whats best for her not just "where they can fit her"

youve been doing so well.
youve been so brave.both you and your dd.
your one hell of a team

regarding her look in the ambulance i know it was acary but this isnt actually uncommon for those suffering trauma and or mental health breakdowns and crisis. its actually the body and mind being overwhelmed. its not uncommon for those suffering to have blackouts,fainting and or seizures. this sound like what your dd had. and its also ways her body and mind is trying to protect itsefl sometimes too. when things got too much they shut down,zone out,stop for a minute.
it can look like a fit,or a seizure. it can then look when they drop like theyve died!
and all of a sudden they come through.its horrific to watch but honestly its not uncommon or sometimes all as bad as it looks. but another fight flight freeze response to trauma.
one of the biggest things for those recovering from illness especially mental illness is care @Bepis .is love.is feeling looked after cared for and supported. it is key. its is the difference. and you no what,she has that in buckets.and she will know it. even if you think she doesnt.even if she swear or screams or yells that she doesnt. you push back with that love of nyours like you have and she will no it and feel it and it will heal the darkness in the worse of days. it will see her through ,like it actually has the worst of days. do you think she would have got this far,fought so hard,been alive even at home for that long if it hasnt been for the love fighting enduring support she had? nope.
she knows she doesnt have to give up.
she knows there is always hope because of you.
she doesnt have to feel she can cope or even no how to yet.becasue she knows you beleive it. she knows you beeleive it and want it and love it for her. she knows her mum is the best kind of mum ever.dont ever doubt that. no matter how dark it gets someone suffering they always no it.

Quick update - She's officially been detained under section 2. She's still at the normal hospital. There are no LD beds in the country so they are looking at a normal psychiatric ward but a quiet one, her own room etc

@Bepis

I hope the last day or two have not been too bad - maybe even brought some answers.

It's very easy to do what most women do and keep thinking that you need to prioritise dd's health, then your DH and other kids. Please listen to us all - You Cannot Help Others If You Don't Help Yourself.

I'm doing a course about how to cope with some very challenging behaviours: the FIRST item on the list is self-care.

Please get in touch with the IAPT and/or local charities. As soon as possible. Now? Tomorrow morning.

The woman running our course recommends keeping a self-care diary and doing something Just For You every day: it can be meditation, gardening, painting your nails, doing a crossword, making sure you drink more water....

Please look after yourself. And I would love to see a post telling us how

Oh @Bepis - I cross posted. You must be in bits or turmoil inside. But maybe there is a little glimmer of hope: that your dd's condition is being taken seriously, and this is the first important step towards getting her the help she needs. You will be extra especially in my thoughts this weekend.

One more thing (sorry, DS and DD both at clubs so the only hour of the week I seem to get to properly engage.)

I also wonder if you really know that the consultant on the video call was talking about your DD when he mentioned the coroner. If he was he should be reported to his medical council. But if there is a chance he could have been talking about another patient - that you understandably assume it was about DD but can't know for sure: then I think you should ask him to clarify within 48h and explain himself. If he doesn't you can ask the matron of the nurses to talk to the nurse involved and report back. Or both. I think it's important you find out what that was really about as it must haunt you.

I admire your courage and love. Look after yourself (this is going to continue until you do!!)

Hi OP, agree with suggestions to push for a specialist referral but in the meantime maybe also look at depersonalisation and derealisation to see if these explain any of her symptoms? There is good info on the Mind website. These are commonly brought on by repeated panic attacks or constant extreme anxiety. They are ultimately harmless but can be very frightening. Sorry this is happening to her.

So sorry - hadn't checked your latest updates before posting.

OK so NOW can you help her to access an Independent Mental Health Advocate? I mean I hope the hospital do it, they should, but in the meantime, on Monday morning, you can make some enquiries can't you OP?

www.mind.org.uk/information-support/legal-rights/sectioning/my-rights/

I've just read the entire thread and I'm delighted to see she's finally getting proper care. I was an inpatient in a psychiatric hospital and it changed my life, I've been 100% well in the 5 years since. I'm sorry you've all had to go through all this.

OK section 2 is what they do to get someone into hospital for treatment. So i assume there being Jo beds they don't want the risk of her wanting saying she's going home I the interim. It's an assessment section usually used as a means to get said patient into hospital. Because 3 means they have to actually have MEANS of treatment.
I'm so sorry this happened.
They must give adequate care.
They must always seek permission first.
They need to discuss.include.
Your dd has right to tender,appropriate care.
A 2 does not mean "she's on a section so what they say goes" nor that she needs any less complete compassion understanding and care.
Have they mentioned funding for more private or specialist options.
They Nedd to find the right place.not just the next empty bed and she's off.

I hope your DD starts getting the support she needs now. My DS was on a section 2 and moved after 4 days to a psych hospital and now on section 3. Thinking of you all. If you want to chat via pm ever that's fine. The Parenting Mental Health group on Facebook has a PMH Inpatient one as well with other parents going through similar. Found it quite useful, thanks to whoever mentioned in before.