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 will ask them this in the meeting tomorrow. She actually hasn't seen anyone in person to do with mental health. It's really upsetting me.

I can't fault the nurses and healthcare staff though, they have been absolutely fantastic.

I also don't understand why a full mental health assessment is not on the cards. I remember something at the last meeting where they said it was something they won't be doing.

In the meeting you need to make it clear how long this has been going on for, that you would like a named person in charge of her care to advocate on her behalf as she can’t for herself, know why she has not been sectioned and as harsh as it sounds - make it clear that you can not and will not be able to look after her and have her ‘return’ and state why - look at the effects on your life and your mental health etc and why any plan needs to be for long term treatment and sectioning.

I'm presuming she is still on the emergency admissions ward OP? She clearly doesn't have capacity to make the choice not to be washed. Capacity, or lack of, needs to be confirmed so nursing staff can act in best interest and at least wash her. Is she eating or drinking? If not what are they doing about this? Have they referred to dietician? Why is she not being seen by the mental health team? She needs urgent mental health assessment and treatment. It doesn't appear she is getting either. This makes no sense to me. Have they just labelled her as having a learning disability? How severe is this LD? Did she attend mainstream school etc? Could they be presuming that this is what she is normally like? Do you feel they medics are listening to you? Have you tried the ward manager, consultant, pals? Have they referred to psych liaison?

I'll be able to answer questions in a bit, just really distressed at min.

Dd being so nasty to me. I don't even recognise who she is anymore. Would it be wrong of me to walk out and go home to leave her with staff? I can't cope with her abusing me verbally.

Go home and get some sleep, OP. She'll be OK overnight.

Absolutely not Op. you need to look after yourself. You have been amazing through all of this. Your dd is so lucky to have you and your dh.

Incase I wasn't clear, there is nothing wrong in going home and getting some sleep. I would encourage it. Maybe then the nursing staff will see how much care and support she needs. You need to look after yourself first in order to look after dd.

I'm just waiting for my lift and then I'm going home. I can't do nights anymore, I don't sleep and it's making me unwell.

She's refusing her antibiotics still and won't let any tests be done. Ripped the blood pressure cuff off really aggressively. They wanted to take bloods but she wouldn't allow it.

I'm scared because if she doesn't have antibiotics, she's going to get unwell and it could get really serious. The nurse also won't let her have her beta blocker until blood pressure is done which is never going to happen so her heart rate is going to go up again. She was tachycardic before.

I'm so stressed and upset but there's nothing I can do for her.

Thank you so much, this brought tears to my eyes. I will definitely answer your other post when I've had a sleep, my brain just isn't working right now.

Doesn't sound like they are going to do much for her in this hospital. Doctor just said she's physically fine to go home. Not really sure how when she won't have medications, is incontinent, hasn't eaten for a week and hasn't had a poo for a week. Doctor made me feel fantastic and said "this isn't the team to deal with mental health". Talk about kick me when I'm down.

@Bepis so sorry this is happening and you aren't getting the support you need. You need to refuse to takw her home against all better instincts and explain you cannot meet her mental health needs at home. With increasing paranoia and tendancies towards violent outbursts (even though you know she is scared she could hurt you or other family members unintentionally).
Have you or anyone else in your corner managed to speak to PALS at the hospital?
It must be so exhausting. Just stick to your guns that she isn't coming home until she has been properly evaluated by the psych team for a decent period of time.

Rest up. And then take someone else from the family with you and tell them you're unhappy that she hasn't been seen by a specialist mental health team, and that you will be putting in a complaint (and actually do put that complaint in)

When she is discharged I would take her to a different A&E. This care is absolutely shocking, I'm so sorry you're going through this. Rest up, take care of yourself. You matter

Half of me wants to say let them discharge go to another a&e.is that possible?
But baring that.stop this shit.its absolute disgusting.her health tell them is in jeopardy. Mental,psychological makes no difference. It's health.its life threatening for both and hers is currently both right now.and is spiralling.
Write everything that's happened.cc in and Email the hospital, your gp, and any health Trust address you can find. And explain what they have now said.
Do not accept this @Bepis .its going to take some real bad ass reserves here but stomp,stand,do not wither.
they have a job to do.they need to start fucking doing it.
Ask if they have children. and then ask them if they would leave their child staring into space refusing medication hearing voices sitting in their own excrement and the rest. list that all.
ask them if they would live and think that it is safe .and that their child or loved one or friend is ok, ok to be at home or to carry on and be discharged from hospital.
Look them in the eye and ask them what they would do if a doctor was telling them their loved one was ok?
Say you cannot and will not take her home where she will come to harm. And actually right now where your whole family will be because your daughter is seriously ill. And it is harming you all. Ask THEM to go home and to be presented with one of their loved ones looking and having gone through what your daughter have and ask them what they would do.
There is no f way she shouldn't of been seen by a mental health team nor got an assessment by now this is absolutely ridiculous.
this is the state of our f mental Healthcare and I'm so sorry you're at the end of it.
I'm so sorry you've been at the end of it for so long.
You're not alone please don't think this is your fault or that your daughter is being treated majorly differently to how many others have been treated with mental health problems.
But I am so so very distraught that it's happening right now to you.
We are all here for you and we are all holding you in our hearts💕.
This isn't your fault.
you're a good mum.
you're a good person.
And so is your daughter. She's just very very poorly. And that must be horrible for both her and you to suffer.
But this is not your fault. And with what they're doing it is becoming there's.
Can you be strong for a bit longer sweetie. I know it's hard I know. I know you just want to stop I know you just need to rest. It is so hard.

Can one of us phonevthe department pretending to be an auntie asking what the fuck they are doing haha

To be fair the doctor is right. It isn't the team to be dealing with mental health. But they have a duty of care to address her mental health needs. They aren't the ones to be doing that, specialist mental health staff are. She needs a period of time on a mental health ward / unit for assessment and then treatment. This may have to happen 'out of area' if no beds locally are available. Where she is currently are failing in their duty of care for her. She is likely 'medically fit for discharge' but that does not include any mental health or therapy needs, so is neither here or there. I'm so sorry you still aren't getting the treatment your dd deserves. I don't say this likely, but do consider Pals to address your concerns. Let the medical team, nurses etc know you are doing this. It may make them actually get proper care for your dd.

@Bepis I v v much hope you went home - and do so every night. It sounds like giving you both space.can only be good for you, and as a PP suggested it might make the ward staff face up to the severity of all this. I am utterly appalled by what is happening to you and DD. The one person who comes out of this as nothing less than a heroine is you: you are fighting for your family with intelligence, dignity and love. I hope they all realise how lucky they are.

A couple of practical points:

1. There should be a Healthwatch in your area. They can take complaints about specific institutions - indeed that is their job. As always the efficacy of this will depend on the local situation people.
2. As PPS have said, I cannot recommend strongly enough getting in touch with local MIND and/or other charities. They know how to sort out problems on the local area, what your rights are, etc.. Do contact them. There are also often also parent support groups which can be a life-saver.
3. You can - if you think it's appropriate- ask your younger DC's schools to refer them to Young Carers (run by Achieving for Children. They organise great 'treat' events for children and siblings of family who are significantly ill with mental health problems. Our local one is fab.

Take so much care of you.

I hope you and your dad are ok bepsis. I, like I'm sure many others, have been thinking of you both.

Hi everyone. Sorry it's been a while since I updated. As you can imagine, things have been rather hectic. I'll try to answer your replies now.

@ilovebagpuss I told everyone in and MDT meeting that I could not take her home in the state she was in at that point and they completely understood. The psychiatrist told the ward registrar that no, she's not physically fit to be discharged because she wasn't eating, drinking, using the toilet etc. She's currently still in hospital. They did move her rooms twice in one day which I wasn't impressed about and it really set her back but she's pulling out of that now. I haven't spoken to PALS. I wouldn't even know where to start.

@rainbpwcupboards I found out that they were wanting to rule out physical causes before they wanted to move onto the mental health assessments which makes sense to me. She's now been in hospital for 10 days and she was refusing all medications, observations, food etc. Unfortunately they had to use clinical restraint to get a repeat blood test which showed raised potassium levels. She now has an IV in and has been treated for that as well as fluids and vitamins etc. she was extremely dehydrated which could have caused the imbalance in electrolytes.

@kateandme Definitely won't back down but if she continues to improve then I would definitely like her to come home. Since being treated for high potassium, she has massively improved. She's talking more, her sense of humour has come back a little and she's just more herself. That definitely wasn't the whole issue but I don't think it helped. Psychiatrist prescribed her Mirtazapine but she has refused to take it so far. She went to the toilet by herself yesterday as opposed to wetting herself. She's more cooperative now too and letting the staff change her and clean her up, in addition to letting them give her the injection in her stomach to prevent blood clots. I agree with you regards the mental health situation in this country. While I can't fault the people that have been involved with dd, it shouldn't have been allowed to get to this point. Aww thank you for your kind words 😊.

@Hairyfairy01 I think that is the plan once her physical issues have been sorted out, to get her on some Learning Disability unit. It depends how she is though, if she improves massively then I want her to come home. It's not the same without her here.

@scarecrow22 I did go home and I have been every night as I just can't sustain through the night because I don't sleep, and then it makes me feel really unwell. I also visit her every other day now, so I do one day and her dad does the other. It's taken some strain off me definitely although I do still have the odd guilty feeling. That is so lovely what you said 🥹, thank you. Also thank you for your suggestions, I will look into them.

I tried to pursue charges with the police for what those teenagers did to my daughter as they caused ABH. Police officer tried to tell me that you have to physically put your hands on someone for it to be ABH or make contact in some other way. Case law says different to which I corrected her, it can include psychiatric harm. She said her Sergeant has said I have to prove causation and he said a kick on the door would not cause a hospital admission 2 months later. How the heck does he know? I told her I had mountains of medical evidence to prove causation. She said that even if these kids did get charged, nothing would happen to them due to their age (15 and 16 year olds). Disgusting system where the criminal is protected and the victim is left to suffer.

i love to see the changes since some of her pyshical needs have been ,et.and so hate to feel like im shitting on them. but with you saying once again like you have before about the improvements. and how much better shes been in some areas. this can happen nyes. but having had no form of treatment for the actual problems here this is just a hiatus until the next spiral.sorry. like previoud when she went to the loo,spoke to you.stopped the staring etc. she did eventually fall again.
so please dont think im belittling any progress in whats hurting her.remember to not let them or her illnes convince you that the real healing needs to be done. and they need to put that in place. your daughter does not deserve to go through this again. to go up and down up and down will only lead to further trauma. they need to be acting in this instance of what they are goint o do next to help you daughter survive and then thrive in whatever the diognosois might be.
a mental illness is not a death sentence or life sentence. with proper help.love.support she can be happy. she can learn to cope and learn the technuques to keep her dettle and feeling in control of it. it takes hard work. but she has so much strength in her.she obviously has a beautoful family. and i promise she can do this. she can get through this. i kno right now it can seem so painfu;l and hard to watch. your doing your very best. we can all see that.
she can get through this. we beleive in all of you.any young lady who has been what she has been through these last few weeks is on tough cookie.

is anyone tslking to her about how she feeling thikning whilst there. this needs to start from the off.i get staffing is an issue for our coutnry right now.but she needs to feel people are caring for the root of all this and for whats going on inside.

@Hairyfairy01 I think that is the plan once her physical issues have been sorted out, to get her on some Learning Disability unit. It depends how she is though, if she improves massively then I want her to come home. It's not the same without her here.

I think if there’s to be a move to a LDU then it’s whats best for your girl that’s important and it not being the same in the house without her doesnt really come into it.

@DesertRose64 I was just thinking out loud by saying it's not the same without her because it's not. Something is missing in the house. But of course I want what is best for her but the problem with an LDU is that according to social care, there isn't a bed available in the country so not sure that is going to be an option.

If she came home eventually, I would need lots of carers and support etc. couldn't do it on my own. But will cross that bridge when we get to it.

of course it makes a difference and deff comes into it. her having a stable home and if she can be looked after with you.with the relevant support it always best to be in the community and best to be at home. its ok and relevant to think this.everyone does. noone would be away from home if there wasnt a need to be. sometimes its not the best option but for some actually being away from home is the very worst things that can happen.for some the trauma and illness only gets worse in those enviroment.especially with some like they are!
and you do have a say. you no and must advocate for whats right for her. and that might be home.
plus its lovely to hear how much home isnt the same without her. and to someone suffering with mental illlness this can also be essential to no/realise. to feel you have a place,to feel loved,to feel wanted can change suffers life and literally save them

I’ve just been catching up on your story and I just wanted to say you’re doing a great job. As someone who has struggled with her mental health since being a teenager and then my own childrens I know how hard it is. Mental health services is very poor across the uk and we shouldn’t have to get to the point of begging for help. My daughter was diagnosed with Autism as a young adult and we’re both waiting for ADHD assessment. I can look back and see how constantly masking my symptoms affected my mental health, I was sometimes very unwell as a young adult. Just something you might want to think about. Please don’t feel guilty about taking a break, you can’t help her if your own mental health is poor. Anyway just wanted you to know you’re not alone 💐