Support thread 13 for parents of young people with an eating disorder

[Curlyhairedassasin]

New thread as the other one is filling up fast....

@Curlyhairedassasin I hope you are managing to look after yourself now that DD is getting some help.

As PM is still disabled, I have cut and pasted the following from the New Maudsley capsule on suicidal ideation. It may help others too. I will break it down into sections and post each one separately. I hope it helps. ALVS (2 of 4) is particularly helpful for communicating with your loved one with an ED. .

New Maudsley Skills Workshops for Carers
Capsule – Suicidal Ideation (1 of 4)

New Maudsley Training Manual Exercise 5.6 Hopelessness: Empowering carers when Edi feels it is all too much and may be expressing suicidal ideation
People with eating disorders often feel helpless and hopeless, and have a much higher risk of suicidal ideation than the normal population. It is so distressing for carers to hear their loved one repeatedly making statements such as:

“I can’t go on”
“You would be better off without me”
“My life is pointless”
“Don’t you just wish I was dead/ I wish I was dead”

Statements indicating hopelessness and talk of suicide should not be ignored and it is a myth that if a person is talking about suicide, they won’t try it. The most important thing is for carers to try to keep a connection with the well side of their loved one and assure them that they are much loved and wanted. Whilst it is terrifying to a carer to hear their loved one saying any of the above statements the most important thing is to stay calm and respond with unconditional love and compassion.

Scenario
Molly, age 17, has gone to the supermarket with her Mum with the intention of buying everything on her shopping list so that she will be able to make all the meals on her meal plan for the next week. Molly wants to go to university next year and so feels this is a really important step. However, when faced with the cold and busy supermarket Molly panics and can only pick up some salad. Her Mum gets really cross and says “For goodness sake Molly you will end up starving to death if you just eat lettuce” to which Molly replies “Maybe that would be better for everyone”

Ask carers to come up with phrases that they could use when their loved one is feeling so hopeless. Affirmations and unconditional love can really help to maintain a connection with the well side of Edi.

Virtual carer response:

“Thank you for telling me how you are feeling and I am so sorry that this is happening and that you are in so much pain. We love you so much and will not let this illness take you from us”

“We would be so sad if you weren’t here”

“The world would be a much worse place if you weren’t here”

“We love you unconditionally and you are such a wonderful caring, creative and talented individual and so important to this family”

By constantly repeating phrases such as these the carer will be maintaining connections with the healthy side of their loved one, boosting self-esteem whilst re-iterating the unconditional love that they feel.

From: New Maudsley Skills Workshops for Carers
Capsule – Suicidal Ideation (2of4)

ALVS can be used for any situation in which emotions are evident:
Attend: You say the world would be a better place without you
Label: I am guessing you are feeling so many really big emotions right now, anger, fear, disgust, sadness, and at times maybe you just feel numb
Validate: I am imagining you are feeling:
· Anger because this is not something you chose and it is so unfair that you are now having to fight this never-ending battle with ED
· Fear because the ED voice is so powerful at times and makes you feel terrified it will never go away
· Disgust because of the amount of food you are having to eat in order to beat this illness
· Sadness because of all the things you are missing out on
· Numb because it is all so overwhelming. I cannot imagine how difficult it is and it really helps me to understand better when you can talk to me about how you feel.
· I am feeling huge waves of all these emotions too. I wish I could wave a magic wand and it would all be over.
Soothe: We are here for you and we will be by your side throughout this incredibly difficult journey. We love you unconditionally and you are such an important part of our family. We all know that these coming weeks and months are going to be really tough. There will be some better days and there will be some horrific days. Gradually, gradually, we will start to see a glimmer of the light at the end of the tunnel. At the moment it seems unimaginable, so far off that you cannot visualise those better times, we are here to help you to start to see through the darkness and every day we make a few steps closer.

From: New Maudsley Skills Workshops for Carers
Capsule – Suicidal Ideation (3 of 4)

Letter writing when Edi has very low self-esteem and has become totally withdrawn – making connections through affirmations

My darling Abby,
It was such a shock for us all when you were diagnosed with anorexia and I must admit there are times when I feel helpless and just don’t know what to say. I am writing this letter to let you know how much I love you and that I will do anything I can to help you through this.
I appreciate that life is really difficult for you right now. For example, I know it must be so boring, frustrating and exhausting having your day so dominated by thoughts of food and the endless meal plan; that at the moment you can’t socialise with your friends like everyone else; that you are terrified at the thought of your periods coming back; coping with weight gain that always seems to go on in the wrong places; and all the other challenges that come with the recovery journey. I have noticed that your eating disorder seems to fill your head with negative thoughts and it saddens me to hear you talk about yourself as fat, ugly, worthless, stupid and a waste of space. I realise that this is your truth at the moment and I wish I could wave a magic wand to get rid of that ever-present bullying voice. When you say those things, I just want to give you a big hug, and yet I have learnt that that is not what you need in that moment and that the ED voice will just push back. We have both learnt that it is better to wait until the ED voice has quietened down.
I see such a different person and that is what I wanted to write down in this letter in the hope that seeing it in black and white will have some counter balancing positive effect.
I am so proud of all you have achieved so far in your battle with this terrible illness. You have managed to eat everything on your plan and you recognise that you need to carry on doing this to achieve your future goals. It must be so difficult being in the in patient setting, having to go from a few small meals a day to 3 meals and 3 snacks. You have shown such determination, courage, faced your fears about taking blood and been so brave when they couldn’t quite get it right. You have really listened to the doctors and I know that once you get through this treatment programme you will be more able to take responsibility for your nutrition and ultimately your health and moving forward from this illness.
Abby you are my beautiful gorgeous vivacious girl and I am so looking forward to that time when we can just be relaxed and happy, looking forward to family events and holidays. Also, all your hopes and dreams for adventures with your friends; festivals; learning to drive; going to university. There are so many things to look forward to and I know you are going to achieve great things in your life. I have your back my darling
Love Dad

From: New Maudsley Skills Workshops for Carers
Capsule – Suicidal Ideation (4 of 4)

Responding to suicidal ideation in moments of crisis:
Carers can also show compassion and empathy as well as unconditional love by being curious about expressions of hopelessness and suicidal thoughts by asking specific questions such as:
“Do you have a plan? If so when, how, what etc”
“Do you have these thoughts often? How often………”
“Shall we talk about this or is there anyone else you would like to talk to?”
“You know you can always talk to the Samaritans, day or night. Here is the number 116 123.”
In addition, carers can also contact the Samaritans for help and guidance. See http://www.samaritans.org/how-we-can-help-you/what-speak-us-about/if-you%E2%80%99re-worried-about-someone-else/what-should-i-do-if-i
Pooky Knightsmith has made several really useful videos about suicidal talk:
SUICIDE: how and why to make a suicide safety plan + great online tool

SUICIDE How to support in moments of crisis

SUICIDE: how you can be a good friend to someone who is suicidal

It is worth keeping a record of suicidal talk and reporting this back to the care team or GP who might be inadvertently focusing on physical risk such as low BMI.
Many suicide attempts are on impulse and/or under the influence of alcohol, so if you believe your loved one might be having suicidal thoughts it is advisable to ensure that alcohol and medication (including paracetamol) are not freely accessible within the household.
Do not hesitate to take your loved one to A&E, or call an ambulance if you are at all worried that they may have made a serious attempt at suicide, and/or of they have harmed themselves in a potentially life threatening way. You can also call the police if your loved one has become very violent, or has run away from home after threatening to take their own life.
Summary
You might have found it difficult to read this capsule as it highlights the fact that eating disorders can come with increased levels of suicidal ideation. Remember if you fail to plan, you plan to fail and so carers who can visualise difficult conversations with their loved one around suicidal ideation, and what they will do in such a situation are then best placed to support their loved one whatever happens. Also, verbalising and practicing potentially difficult conversations is always worthwhile.

@Shanghai101 Thanks so much. willgo through a bit later.

Team will try to fit the NG tube now. If not she will get sectioned tomorrow and they will try to find a tier 4 bed then. Will see. I hope they can fit it now.

@Curlyhairedassasin Whatever happens, she is getting help now - and that is down to your love and care and advocacy for her. I've been awestruck by how you have coped with everything that has been going on. I hope this is a turning point for your DD. Look after yourself.

@Curlyhairedassasin
Jenny Langley sent me a document on NG tube feeding. It’s too long to post but I’ll try to pull out the most relevant bits.

New Maudsley Capsule
NG Tube Feeding within Eating Disorders

NG tube feeding examples:

Scenario One - my daughter has been admitted to the general ward and an NG tube is being administered. She has willingly agreed to this. She says it gives her permission to be fed something. She hasn’t eaten for 5 days, or drunk for the last 24 hours.

Attend: My daughter is suddenly being NG tube fed
Label: I feel in shock and really sad and confused and terrified
Validate : Shock because I never could have imagined this would happen to my gorgeous girl
Really sad because she looks so fragile and lost and lonely and I can’t fix this for her
Confused because I don’t know where this will end up
Terrified that she will never be able to eat normally again
Soothe: Having taken a breath, I can see that this is an essential life saving intervention and that it is a good sign that my daughter has accepted it willingly. There is part of her that wants to get better. She can’t eat at the moment because of the power of her ED. That doesn’t mean she won’t start to eat once she is more stable and/or she has learned other ways to quieten the ED voice.
The hospital staff seem very compassionate and have explained what is happening every step of the way and that is reassuring for all of us.
I will bring in her favourite books and photo albums and her diary so that she has other things to occupy her mind. Also Dobble, - she loves to beat me at Dobble.

I agree. You are amazing @Curlyhairedassasin. There is so much hope for your DD.

From: New Maudsley Capsule
NG Tube Feeding within Eating Disorders

2020
There are guidelines for dietetic practice in nasogastric tube feeding under restraint for patients with anorexia nervosa (2020), endorsed by the British Dietetic Association (BDA) and the Irish Nutrition & Dietetic Institute (INDI).
Parents or clinicians may also find it useful to read case studies of NG feeding under restraint following the above guidelines, in Nasogastric tube feeding in line with new dietetic guidelines for the treatment of anorexia nervosa in a specialist children and adolescent inpatient unit: a case series (2020).

Eva Musby article with Sarah Fuller as guest
NG tube feeding when someone has anorexia: parents' questions • Eva Musby (anorexiafamily.com)

From what I gather @Curlyhairedassasin it would be good for you to have a pre—brief and debrief with the nursing staff to help you process Hopefully, this will be offered to you but if not maybe ask for it. It is recommended in a paper by Sarah Fuller and others, published in January 25, on the impact on parents when their child is NG fed.

Hopefully, this won’t apply, but I thought it worth mentioning, in case it is relevant to other people, that they advise against parents helping with restraining the child as this can damage your relationship. The role of a parent is to support and care for their child but if they participate in restraining then they can become someone to be feared which is inconsistent with the role of a parent. This in turn can lead to a child being unable to regulate their emotions and being more vulnerable to mental health issues or trauma responses (references can be found in the article below).

New Maudsley Capsule
NG Tube Feeding within Eating Disorders

Papers and Guidelines:
January 2025
Impact on parents when their child is NG fed under restraint
You can read the full paper at
https://journals.rcni.com/nursing-children-and-young-people/evidence-and-practice/nasogastric-tube-feeding-under-physical-restraint-understanding-the-effects-on-parents-and-how-to-support-them-ncyp.2025.e1546/full

Ng tube is in. She cooperated but I wasn't in the room. neither me nor DD wanted it. Big relief that this is done now.

Cannot believe that we sat 3 days ago in a&e with a non eating anorexic and was send away without checks and a referral to the mental health team only. I am so angry when I think about it.

Thinking of you @Curlyhairedassasin hopefully now this is your dds road to recovery ❤️‍🩹

That is good to hear @Curlyhairedassasin. It sounds like you have both handled it remarkably well.
I understand your anger and have experienced the same. In due course, I would write to PALS but for now focus on yourself and your brave girl

Hello all. Has anyone received mobility component of PIP for child with anorexia?
My child is currently an inpatient and very unwell. She has home leave but can't go out on her own and must be supervised at all times.
We've been through hell as I'm sure you will all understand.
Just doing this PIP form and wondering whether to complete the mobility bit or no point?
Thanks for any ideas or opinions

@H0n Iirc, we filled out all of it, but the feedback was that it was the support she needed with eating which was key. If your DC should be on bed rest / hospital at home, then I would say that the mobility part is very relevant - also if they have a tendency to compulsively exercise and need to be accompanied. Is your daughter in a paeds ward or EDU - we were advised that PiP should be stopped if someone is an inpatient for more than 4 weeks, but this is NOT CORRECT for yps under the age of 18.

I filled the mobility part out when she was an inpatient. Even now she needs restricted exercise. She gets the higher rate so worth completing.

Thank you both so much. She is in an EDU, she has been there for six months. Yes she compulsively exercises. I will complete that bit and see what they say.

Sorry to everyone going through this 💐

So you got the mobility part too?

Oh and yes. I did think there was no point applying whilst in hospital but had been told by someone that it doesn't count for children. Thank you

she gets the mobility payment too. She uses it to pay for cabs to appointments and things she wants to do because she can’t walk or use public transport because of the exercise involved.
There are websites that gives ideas about wording. I didn’t use them and just answered the questions. It was really upsetting actually because it brought home to me and her how limited her life is at the moment which we usually manage to ignore

I didn’t know she was eligible to apply in hospital until the social worker told me. CAMHS should have really, it’s expensive having a child in hospital or needing this level of care.
PIP is a passport to other benefits like carers allowance (means tested). if she gets a certain score on the mobility part, upu can apply for a blue badge which is a lifesaver when trying to park in hospital car parks

@Mummyoflittledragon hope you and dd are doing ok. I’ve been missing our chats via pm. There is talk on the other thread that they might not be reinstated.
I don’t know how you’d feel about it but I’d love to meet up in person before I move. Is the city near you with the letter after the first letter of DD’s name workable for you or would the city I’d said I’d worked in and you had to pick up dd from a night out work better?
Completely understandable if it’s not something you’d want to do but thought I’d put the offer out there before distance became more of an obstacle.
Another thread had two posters arrange a meet up at a mutually convenient M&S. thought that might work for us.

I found it. :-)

Yes I found it incredibly sad writing about it. How did we get here?
I'm so sorry