F.E.A.S.T's Around The Dinner Table forum

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Adlih64
Hello everyone
I posted an update around 10 days ago when I was battling to make decision whether to go back to hospital or not.  I had to delete it shortly afterwards as I found out D had been looking at what I was following here from my phone and would’ve been able to identify her situation.  We had basically been deciding at keeping going with meds or admission.  My heart ruled my head initially and we increased olanzapine dosage but after another few days - 10 in total since overdose it was becoming increasingly clear that we couldn’t manage and she was admitted to hospital late Friday afternoon.  Self harm was increasing and continuous suicidal expressions, refusing medication, violence towards me when enforcing meals, restricting intake and weight loss.  She agreed to go but quickly started to speak of quick return home.  My worry is that she spoke with her doctor first thing on Monday morning who told her she will only be there a few weeks.  How does she know this when only seen her for an hour?  She was weighed on Monday and is exactly the same weight as when discharged early December so any progress made there is gone and her mental state is in a much worse place.  I have spoken with care manager today and it feels like they are going to push for quick discharge, saying she is compliant with meal plan - but she has only been on half portions until today and has been on the phone to me constantly in a state about it.  She is choosing the supplement regularly over food.  I’m sure she will make another attempt on her life if discharged in current state without supervision 24/7.  She managed this even with me at home all day.  They have arranged meeting on Monday in which I’m sure they are going to suggest home and will end up with us refusing in front of her which will only harm her mental state and buy into thinking that she is worthless. Talking about a referral to social work due to violence towards me.  Whilst this was an issue, it is absolutely the anorexia and was never an issue before.  This isn’t even the pressing concern for me, rather the danger she poses to herself.  I don’t think it’s realistic to restart fbt at present either.  Doctor to phone me tomorrow but feel like they look to discharge as soon as she’s admitted.  Hospital was always our last resort so can’t see how it can work without her getting help there first.  Things been made more difficult due to school closures, my younger two have already suffered dreadfully and cannot be exposed to this whilst isolating at home.  Elderly grandparent now unavailable for them too. Also have the same fears as everyone else about available services during current health crisis.  
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Enn

I am sorry there have been some difficult  times for you recently. 

Having that conversation with the doctor will be useful. I would suggest writing all your questions down and not getting off that phone until all your issues have been addressed to your satisfaction. 

Document all the answers and email them back to that doctor. Ensure you have a good plan when you get off the phone. Remember what d says to you AND her doctor may not match up. I would advise you to make sure they know the truth. 

Sending my best and hope that it goes well when you speak to the doctor.
please let us know how it goes.
🌺

When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Foodsupport_AUS
I am so sorry that things have gone so badly lately. I understand your worries about taking her home too soon and managing with a child who is suicidal. We had these issues too. 
I agree with Enn that talking to them beforehand and raising your concerns is an essential first step. If it did get to them offering discharge in the meeting however rather than you refusing to take her home, I would be raising with them how certain they are that she would be safe at home, as you have grave concerns with her self harm and suicidality. Make her safety and well being the issue rather than whether or not she would eat. You can make it clear that they would be responsible if anything happened to her. This way it is not you refusing to have her but rather you fears for her that are the issue. 
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
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Adlih64
Thank you Enn and FoodSupport.  I have yet to hear from the doctor but charge nurse called today asking what we could do for passes over the weekend due to the Coronavirus outbreak and their view that patients will be less likely to contract it in their own home.  Alluded that if we refuse and they go into lockdown that we will be unable to see her for a long time.  I know that she is unable to come home just now especially given that community services are likely to be reduced.  I would have her for an overnight at the weekend if it was with the view of spending some quality time together prior to this but the undertone is let’s see how she responds to home environment and I can’t help thinking that it wouldn’t be much better returning her knowing lockdown is coming.  They keep stating that she is managing current food plan - she’s not as she is constantly in the phone to me in a state of distress, opting for supplement most of the time and this is only on half portions which won’t maintain her weight at home.  The self harm and suicidal ideation don’t appear to be addressed.  I haven’t made a decision on what to do over the weekend and am really torn trying to decide what will be best in the long run.  
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Enn

I am just thinking out loud, if you bring her home then they close all doors and you cannot get her back in, how do you feel about this?
 

To take her out on leave and then take her back actually increases social contact, I would think? 
This is not just about the eating this is for your safety and her getting more specialized care, I think.
Hard hard decision and I see both sides. Do you take her home and then have no access to care, or do you keep her there and risk not see her for awhile? 

Here  at our hospitals all visitors are not allowed except for parents of kids and palliative care or for those who are end of life /very very ill, and other extraordinary situations.

I would ask what their policy would be about those situations. Of course no one knows for sure as things seem to be changing minute by minute now .
😔

When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Adlih64
I did ask this morning about possibility of lockdown whilst she is at home and was assured that she would be able to return.  I also think increased risk of contact but think it’s actually more about staffing levels.  She is not long off the phone having been told by a nurse that she has a full weekend pass for trying so hard.  Livid not the word but spoke with case manager who confirmed due to staffing shortage and that her bed will still be available.  She also told me that meeting on Monday is cancelled with no reschedule just now which is making me think they might be preparing for lockdown.  Visiting was limited to parents yesterday and today just one at a time.  On this basis I am leaning towards having her home maybe on Saturday into Sunday as we may not see her for a while but will double check policy of return when I go in.
thanks Enn 
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Torie
I can believe they are telling the truth as they see it when they tell you they will let your d back in after home visit, but I do not believe anyone can know what tomorrow will bring in these unprecedented times.  I think there is a definite possibility that whoever told you that will be surprised when an order contrary to that is announced.

We have relatives who are stranded in far-off places, and they keep being told encouraging things (e.g., flight tomorrow!) by well-meaning people only to find the reality different than what it had appeared.  The situation is changing fast.

Sorry if that sounds alarmist.  It is of course for you to decide if I am overreacting.

All the best.  xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Adlih64
Thank you Torie this is my concern also
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Adlih64
Hi I brought my daughter home over the weekend and was happy to have her at home.  However it did show that she is not ready to be at home - talk of suicide and stated depression even worse at home, difficulty with meals although managed ensure and not wanting to near her brother and sisters.  Says she doesn’t feel part of the family anymore.  She returned on Sunday evening in a state of distress.  Speaking about wanting to die in the hours beforehand which my other children listened to again.  The discharge meeting was moved from Monday until Friday.  I haven’t been given the opportunity to speak with the doctor overseeing her care but have voiced my concerns to many others.  This appears to have no bearing on the outcome and I am being told in no uncertain terms that she will be discharged.  They called this morning and asked us to take her today and then return only for meeting on Friday which we refused.  I have been informed by CAMHS that all services will only be by telephone for the foreseeable future.  Nothing about our situation has changed apart from reduced services.  I am still waiting on request for change in psychiatrist to be approved, however doubtful in the current climate.  I can’t imagine how we will manage especially now with everyone at home all day.  I tried everything to keep her at home and it really was a last resort to go to hospital.  I am worried about the effects in my younger children as well as how to keep my daughter safe.  About an hour after relaying this to her case manager, my daughter was told that they are looking at alternative accommodation for her to be discharged to on Friday should we refuse to take her home.  Either way she has to leave hospital.  She has just called me informing that she is discharging herself tomorrow as I am the only one saying that she can’t do it at home.  I know it won’t be straightforward but this has worsened the situation in that we have been pitted against each other and feel like I am being portrayed as a terrible mother.  Like all of us here, I have given up much of my life including my job and being an available mother to my other children in order to care for her.  I didn’t mind this when I thought we were making progress but yet the situation continued to deteriorate.  Her current weight is the same as when discharged in December but her mental state has worsened significantly. 
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Enn
I am sorry to hear this. 
Have they discussed Plan A, B and C with you? What happens if she does not eat for 24 hr? What happens if she is suicidal? What will the follow up be and how will they ensure her safety. 
Have they discussed all these plan with her and you together so that everyone knows the plans?  I would push them to document what is to happen every step of the way. That way you have a good map of what to do. 

I would put in a formal complaint that they have not put weight on her and that was the primary medical goal for her! And as time has ticked on she is more ill than at admission.
I am so so upset for you.  
You may be portrayed as a terrible mom by her and right now, but these are the steps (hard steps) you have to take for her to get better. 
Sending my best. 
🌸 
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Foodsupport_AUS
I can hear your distress at the situation. It is great that she managed her nutritional intake over the weekend even if it was via Ensure. That at least speaks to nutritional safety. Her talk of suicide is the bigger concern, and the assessment of her safety and the risks that you are dealing with and the effects of her mental health on your family are paramount. 
I would let her know that your concern is not about her being able or not able to eat at home, although that of course is a concern,  but rather her feeling suicidal and the ability to keep her safe. This puts it on to you rather than her.
One bonus of course will be that the whole family will be in lock down, no outings, so a much greater ability to supervise her eating. 
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
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Torie
HI Adlih, I'm so sorry you are faced with this difficult situation.  I'm not sure what to say as I am not familiar with your system, but please know that we will be here to hold you hand whichever direction your journey takes next.  I assume you have removed / locked up all sharps and meds and will do your very best to keep her safe.

I hope they will not allow her to sign herself out and will find some kind of accommodations for her.  If she does end up at home with you, we will do our best to help you keep putting one foot in front of the other to get through the day.  One day at a time - that's all we can ever do.  Thinking of you xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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melstevUK
Ho Adlih64,

I think you need to find out the real reason why they are insisting on a discharge - lack of staff with the current situation? Do they believe all patients are safer from Covid-19 outside a hospital setting?  Are they planning to shut down the unit totally?  If they are not planning to close the unit totally, then you need to request for her to stay and be given high priority. 

I think you need to start with the reason for the discharge first and then decide if you want her moved to a general psychiatric ward (not brilliant from the ed side of things but better at keeping her safe and dealing with the suicidal behaviours and feelings) or back home (where you have more supervision in terms of ed).

If she comes home then if small meals and ensures are going to keep her going, then take whatever road is the easiest.  Others would say put your efforts into refeeding but if this is going to cause huge stress on you and your other children and you don't have the energy to do battle right now, decide on what you think you can do.  It might be a matter of coasting and trying to maintain weight throughout this horrendous period while putting your energy into trying to keep her stable, staying calm yourself and talking her away from the suicidal thoughts. 

You say she does not feel part of the family but maybe if you ask her to help and entertain her siblings she might start to feel useful and included again.  What ages are her siblings?  Maybe you can use this as a bargaining chip - you will take her home if she starts to think about how she can be useful rather than fighting with you over eating and meals instead of asking for her to be taken to another hospital setting.

I would be upfront and tell her the only reason you do not want her home is because you do not think you can keep her safe, but if she cooperates with you and tries to hold things together and help you with her siblings, then you will support her coming home. Tell her you want her home (I am sure she knows that this is the case) but that things need to change if she does.

These are desperate times and just trying to keep things ticking along rather than making huge strides agains the ed may be the only option at present.  If you could manage to achieve some kind of harmony and calm, you may find at that point you can make some inroads with the ed.  

Good luck and hugs.  The others here are more successful with refeeding than I was and so I always looked at what areas I could make progress in, even if I could not get weight on.
Hugs.  Tough, tough situation right now for you, and very unfair.
Believe you can and you're halfway there.
Theodore Roosevelt.
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Adlih64
Thanks support means a lot.  Enn as far as I know the only safety plan is to refer back to community psychiatrist who to date has been dismissive but now feels it can be safely managed? No further elaboration on this. I am sure that she will remain suicidal and would go as far to say that she will make an attempt if given an opportunity.  She has gained 0.5kg this week but our usual pattern once gained is followed by a loss of the same or more the following week so would prefer them to observe how she reacts to continual gain.  She’s told me regularly how bad a mum I am so don’t let that bother me too much! as I know it’s the illness but the insinuation by hospital staff is hard to deal with especially as it plays into her narrative.  Doctor told her yesterday that perhaps I need some help and advice as she is not violent with the nurses.  My husband has just came back from the unit and she was violent towards him due to reluctance to bring her home tonight.  FoodSupport I feel the same in that her safety is paramount.  I am unsure how much information has been passed by the community psychiatrist as this was omitted in his correspondence with GP and FBT therapist, most likely due to his refusal to acknowledge it.  I have reiterated to several staff members in the hospital but was told today that they accept his information.  I have followed this up with patient affairs and submitted a formal complaint. Torie I don’t think alternative accommodation will amount to anything certainly not by Friday and it is being used as an emotional tool to accept her home, this has caused her unnecessary distress this evening.  Thanks all for listening x
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Adlih64
Hi Melstev, there are 3 wards in the unit and I believe they have closed one so there are no free beds.  I feel that a time limit was put on admission in the beginning.  She was admitted late on a Friday and saw her doctor first thing on the Monday when told she would only be there for a couple of weeks, it appears regardless of anything else.  In terms of meals in the home, I feel I would need to go with your suggestions just now as cannot revert to daily screaming matches and violence whilst we are all in the house constantly.  I fear that the only way to avoid this though will be allowing her an inadequate amount.  Her siblings are 13 and 14 so there isn’t a big age difference.  She is close to 14 year old sister but on Saturday struggled to sit in living room with family.  I do want her home but she told me only yesterday that although she wants to get better it’s just too hard just now.  
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melstevUK
Hi again Adlih64 

I am really disgusted by what that doctor said. She is not violent with the nurses! Yes, so that would indicate to me she is better off on hospital right now. Very subtle parent blaming by someone who must be new to eating disorders. 
If you take her home please make sure you have plenty of ensures so you are not needing prescription or trips out specially for them.  You will feel better if you have a huge supply. 
I was on my own with my d but I wonder if your other children would be willing to support you. Do they know thst she feels set apart from the family? Can they be persuaded to speak to her and tell her that they love her, want her home and want to help her? 
Structure can help with so much. Do they have schoolwork provided for a couple of hours a day? They are supposed to. Can they work together?  Could they do a jigsaw together in the afternoon? Jigsaws are so soothing and are often used in ed units.

You are going to get through this. You don't know how but you will, for no other reason than that the sun comes up and the sun goes down and the days go by. 
It is worth finding out what they mean by other accommodation at least. And trying to get her agreement to put you in charge of her meal plan if you take her home. 
I hope she was not allowed to discharge herself today. 
Believe you can and you're halfway there.
Theodore Roosevelt.
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Adlih64
Hi thanks melstevUK I just can’t believe this is happening, alternative accommodation would mean to be accommodated by social services.  I told her this was an empty threat as there would be no availability by Friday - I’m a social worker and these things take time.  However, she’s in a state now as doctor came to see and completed referral with her and she believes there will be a meeting today.  Also told her that police were being asked to the meeting as I was rude on the phone to bed manger (wasn’t but voiced concerns) and were planning to ask that I am charged with abandonment if I don’t take her home!  I am absolutely disgusted with this behaviour.  If the doctor wants to threaten anyone it should be me and not through the mind of a mentally ill girl.  I have never even spoke to this doctor yet but apparently it’s too much to have the opportunity to discuss concerns prior to discharge.  CIIT team have confirmed that they will not be available in person and have emailed concerns to the unit.  I work in hospital discharge myself and never have I come across such actions, think it’s been partly driven by community psychiatrist stating that we can manage at home, thanks though and you are right we will get through it somehow just starting to lose faith in any professional help.  I feel like taking her out now but am very worried about her stability and other kids. 
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melstevUK
Adlih64,

This story is beyond belief.  It must be one of the worst I have heard in professional mismanagement.  Do they know you are a social worker? It is actually very scary to feel you are part of a system and doing your best,  then not only does the system let you down, but actually turns against you. 
There seems to be noone around at all who really understands the illness and how patients can present. 
I think it is disgusting to tell a sick child that the police are being called to a meeting because of her parent's behaviour. How very upsetting. She really must wonder what is happening. 
Is there anyone at the hospital or in the team who you have some kind of relationship with? 
Could you tell that person that you will be happy to take her home on Friday if the staff in the hospital give her to understand that you will be in charge of her meal plan in line with an FBT approach?  Which I think was what the team were supposed to be doing in any case, even if not successfully.  
It would be extremely harrowing but also totally inappropriate to place her with any family who knew nothing about eating disorders. 
I think you have no choice but to take her home but see if you can manage to get it put on the best terms possible for you.
Believe you can and you're halfway there.
Theodore Roosevelt.
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Adlih64
So just came back from discharge meeting where I was told that I am the cause of her anorexia and am making it worse by abandoning her.  I had to leave during this as it was so difficult to listen to and community psychiatrist would not detail any care plan over the following weeks.  I can’t believe the lack of professionalism and compassion being shown towards patients in this unit.  She really went there as a last resort.  I Initially refused to take her home as there is no services in place apart from telephone calls but on reflection we have decided that she would be better at home as the treatment in there is more damaging to her mental health.   She is promising to try her best with meal plan and meds so I suppose we will just need to see where that takes us.  
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melstevUK
Adlih64,

Can I email you separately about this please?  This is beyond unacceptable.  

Mel 
Believe you can and you're halfway there.
Theodore Roosevelt.
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Adlih64
Yes absolutely thanks
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MKR
Hi @Adlih64,

Just voicing my support, speechless at this outdated thinking thrown at you.

Stay strong,
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
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Adlih64
Thank you MKR, I think they were going to do anything just to clear their beds.   I don’t even mind so much about it being done to me but the emotional turmoil it caused her was terrible but she is back home now, has eaten dinner and just had a short game with her sister which was nice so will just get on with it from here. 
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MKR
Adlih64 wrote:
... she is back home now, has eaten dinner and just had a short game with her sister which was nice so will just get on with it from here. 


Awww, sounds like music how your evening went 😀.

During recovery especially (but at othet times also) I play to the kids the videos of them as babies, especially how they used to openly adore each other. 

I agree with you how the team could have been more honest and open about lack of resources at this time.  We are all human, we understand, and we don't intentionally add stress to others. So no need to treat you and your d like this.
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
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