Support thread (8)for parents of young people with an eating disorder

[myrtleWilson]

Welcome to anyone who is a parent/carer of a young person who has (or suspects may have) an eating disorder.

We're experts by experience and will share our insight - but obviously we're not medically endorsed, we celebrate all our small wins and provide a space for relief from the intensity of supporting a young person whether pre teen, teen or young adult with any eating disorder

Hey everyone. I'm new here, (well, that's not exactly true I've been reading the threads for a few weeks and kept typing out a message then deleting it). My daughter is 17, autistic with OCD, severe social anxiety and was diagnosed with anorexia two weeks ago. I fought for over a year to get her help, diatician service through my GP refused to see her as she was on the waiting list for CAMHS for anxiety (that took two years) and when she was finally seen in September the mental health professional came across in a way which got her back up. She refused help for the anxiety, and denied any eating issues so CAHMS said there was nothing they could do. I was devastated but kept on at my GP who fortunately was great and kept writing to them to get them to help her.

My daughter decided she wanted to start "healthy eating" the minute I removed her from school to home Educate as she hated school and wasn't coping, and despite fighting with the school and LA for 18 months they couldn't provide her with the education she needed, a tutor outside the class (because she was in 5th year they used the excuse they'd need different teachers for different subjects and no teachers would do it, any education would have been better than nothing but they honestly couldn't care less). I knew the moment she said she wanted to do healthy eating that she would develop and eating disorder, I had one myself at that age and it was like watching my own behaviour all those years ago.

The healthy eating quickly escalated into eating practically nothing. In February I decided to get her weighed at the GP, something I'd avoided as I knew knowing her weight would spur her to lose more. She weighed 10 kilos less that she did when she was 12. I was devastated and kept on at CAMHS, as did our GP, to do something. She had ARFID growing up so CAMHS said it could just be that, I knew it wasn't as with ARFID she would still eat a decent amount, albeit of a very small amount of food types, but she would snack, not worry about weight ect.

So CAMHS finally done as assesment and began to take me seriously when they were informed about the weight loss. She's 5'6 and 48 kilos. Between the initial appointment at CAMHS when they decided to arrange an assesment and two weeks later at the assessment itself she lost another 2.5 kilos. She is refusing to admit she has an eating disorder and I'm mentally, and physically shattered. I have to sit up with her all night because of her anxiety, she doesn't sleep at night till 4/5 am. She has no friend group, doesn't go out, so I'm basically a substitute friend, which I'm happy to be but at the same time heartbroken for her as this isn't the way her life should be.

Her dad is refusing to accept she is anorexic. I told him over a year ago she was, over and over again, it caused so many arguments and despite the fact she has been formally diagnosed he won't accept it. I left a leaflet for him to read on the coffee table, right in front of where he sits, and he never read it despite me asking every day. I'm so angry with him. I have literally noone to talk to, my family don't understand and gave their own problems so I don't speak to them about it, I can't speak to my OH as it's a waste of time. I go to sleep, in the spare room, every night at 7.30pm, crying, and my daughter wakes me up at midnight to go sit with her. I'm disabled and this is having a toll on me, but she comes first, every time, I don't care about my own health I just want her to get better.

The diatetics team have issued a refeeding plan, she taking the vitamins but refusing to eat the food increases. She goes crazy every time I try. I'm so exhausted. They've also reffered us for FBT, but no appointment yet. My daughter has a PDA profile of autism, pathological demand avoidance, so me asking her to eat is a demand and she can't cope with it. I can see where this is going, and I'm terrified for her. I was in a mental hospital age 20 due to a mental breakdown, she wouldn't cope with it. Her safety is being home with me, I can't even leave the house.

Apologies for writing all of this, I'm just so broken, and I need to be strong to help her and it's becoming increasingly difficult. I'm so angry with my OH, I don't even have the energy to speak to him, even if he did accept it his answer is for her to "just eat more food", he has no idea...

I just needed to get all of this out. Reading your experiences has left me even more heartbroken for your children too.

I despise this illness.

AnArundelTomb

I don't have a lot of time this evening but I just wanted to quickly reply to say I'm so sorry you're going through all this. It truly is a hideous illness. You're in the right place here for support, advice and solidarity. There's also a good FB page called Eating Disorders Parent Carer Support UK and I also follow a FB page called Parenting Mental Health which is incredibly supportive.
Sending you love ❤️

Oh @AnArundelTomb am so so sorry to read your post. The pain you are feeling, the despair, the frustration and the love you have is seeping out of every word. Am glad you stopped pressing delete and pressed post instead. There is lots of advice and support on here as @BagpussSaggyOldClothCat has mentioned but I think for tonight maybe you're mainly looking for a welcome and a hug of recognition - we know (in the words of Taylor Swift) 'All too well...'

Is anyone thinking of going on Hope Virgo's march on the 20th May (in London) - I'm very much considering it and if anyone was up for a MN support thread meet up in real life, let me know!

https://www.eventbrite.co.uk/e/join-us-to-march-and-fight-for-those-affected-by-eating-disorders-tickets-526987151757

@myrtleWilson I'm thinking about it. I was really horrified to see that post of hers about the 50 year old lady who wanted to recover, but had been transferred to the hospice.

Anarundel I'm so sorry that sounds unbelievably hard, I strongly suspect my dd is autistic and although it makes some aspects of recovery more challenging in other ways it can work in your favour if they like routine and rules for example.

Are you now preparing her food and giving it to her? Is she physically stable?

We are away at the moment in a caravan in Devon, the weather has been horrendous 😩 I've got my 9yo niece with us and I think that's helped dd, it's given her a distraction. She's been eating okay but as always less than I would like. I think when we're away it highlights that we still have a way to go to full recovery for example not joining in with hot chocolate's and biscuits on the beach or giving dniece a lolly that were free on the counter in reception but refusing one for herself...

How's your dd doing Nan? That is terrible re the lady being sent to the hospice! This country beggars belief when it comes to the treatment of people with serious mental health disorders.

AnArundelTomb

Just reading your post again and wanted to share my experience with dh. My dh refused to believe dd was very ill at first but has since said he was absolutely terrified deep down and had his head firmly in the sand. My local camhs ED website has lots of resources and I kept sending him links. Beat also has good resources. I'm sure your camhs therapist would talk to him if he'd be up for that.

It would be good if you could get your dh to understand that ED really needs the whole household to be strong and to fight against it. It thrives on separating loved ones. In my case my dh and I have come close to living apart but we have learned to put bad days behind us, move forward and stay strong as that's what dd needs.

My dh generally leaves dd's care all to me as that's how it works best for us. We have our own roles. I'm the carer and he works and does what's needed around the house and he also acts as spokesperson with relatives which takes pressure off me.

I hope you and your dh can find a way to both support your dd together, even if your dh initially just takes on a few extra chores so you have more time and energy to help dd, it all helps

It's very hard for family and friends to really understand what it's like to care fir a mentally ill child, only people who've been through it can truly empathise. I hope you can get strength from this forum and the many other areas of support that exist.

@Girliefriendlikespuppies that sounds just like my DD - all seems to be going well and then you have these reminders that your DD is battling their demons that won't permit them to have something 'extra' such as a lollipop, or they pour only half a cup of juice. TBF DD has a sweet tooth and has eaten a good share of chocolate over the easter weekend which reminded me of easters past.

@NanFlanders how is your DD settling at Altrincham? How does it differ from the service provision at Alder Hey - is it based on time spent there, rather than being discharged at the earliest convenience which is how we felt with our DD's hospital stay.

We are 18 months since diagnosis and it does feel like the relationship with DD has been severely damaged and perhaps beyond repaid, trust has gone (so many lies), the arguments and physical violence towards us as parents - is it time that will heal this? I say this because we never bring up those dark days at the beginning of refeeding - although the house still carries some of the scars of the smashed furniture. Should this be discussed with DD or packaged up as a bad memory never to be revisited.

@AnArundelTomb - So, so sorry to hear this. If it's any help, I have called the Beat helpline and just sobbed at them: Helplines - Beat (beateatingdisorders.org.uk). They also have some great, free, online courses. I wouldn't jump straight to the idea of a mental hospital: current practice is very much focussed on FBT - which does in fact work very well for 50-80% of young people, with inpatient only as a very last resort. My DD was admitted to general Paeds 8 times before they even referred her - by which time we were absolutely desperate for her to get a place.

@Girliefriendlikespuppies and @D1ANA - thanks for asking. We are cautiously optimistic about the Priory so far. Rough start with little consumed - staff told us if she lost any more she would have to use a wheelchair and have a special bed. In the end they had to give two lots of NG feeds under restraint, one in the corridor as she resisted going to the NG room. She then started eating (or drinking shake if she couldn't). There were several phone calls saying how much she hated the place and begging to come home. Saying she was going to starve when she came out. Ignoring us on visits.

However, the last few days, she is looking visibly better, as the food is going in, and is now talking about registering for education, which she had completely lost interest in, and about getting her nose pierced! She's also spent some of her PIP, which she had resisted doing - apparently, hoarding of money is another sign of anorexia (see the Minnesota starvation experiments). She is eating bread for the first time in about 18 months, and using a normal sized spoon. The staff all seem lovely, and there are activities on the ward, and trips out they can 'earn'. They have to make their own meal plan, from a list, so they are actively choosing food, and gaining control over 'the Thing'. As I understand it, unless there is a real turnaround in attitude, so the consultant feels they can manage in the community, they stay as inpatients until they are a healthy weight, and showing they can maintain. (I also used to despair that she was just starting to show an improvement, and she'd be discharged to start restricting again). My main concern now is that a lot of the girls seem to have been in a few times, but for now, I'm just trying to live in the moment and focus on the positives.

Nan that sounds really encouraging.

@NanFlanders that does sound positive, like you we take everyday as it comes - feels like the only way to carry on and when you have good days then we take those as a win. Tabitha Farrar writes about hoarding money - our DD does that, she spends nothing of her own money and hoards school
snack money and weekly pocket money.

Are you able to recharge your batteries whilst your DD is at the Priory - you’ve had a hellish year, taking some time out is essential although I know myself it is sometimes easier said than done.

@myrtleWilson I've just read a message that Hope Virgo has retweeted about a 21 year old being referred to palliative care, and it's prompted me to book for the #DumpTheScales march. Are you/is anyone else going? It would be nice to meet up. If people DM me, I can start a WhatsApp group for marchers maybe?

I've just read that too and have signed up for the march - I'll DM you now

I've been a little bit better lately at sticking to my personal boundaries and not allowing dd's illness to totally consume my every waking thought but there are days when the doom just creeps in and it's hard to shake off. Particularly, like yesterday, when dd declared there's 'nothing to eat' two hours after a £200 grocery shop has been delivered and demands I go to the shop. I say no firmly and stick to it but I get that awful tummy drop and the anxiety hits me like a brick. She says 'I won't eat then' and I hold my ground and generally she does eat but not quite enough.

Then I spent yesterday feeling anxious and guilty and didn't sleep well with those horrible anxiety dreams - I was late for a flight and needed to pack but I couldn't find anything and the taxi was beeping. Oh the irony when a holiday is definitely not on the horizon anytime soon!

@BagpussSaggyOldClothCat feels like the ED is trying to push you around - we had DD insist on same cups, small spoons, accusations of buying ‘larger’ bread buns etc etc We held our ground, avoided ‘debate’ and pushed on - every meal my anxiety was through the roof, making sure her plate was on the table before she came down to dinner, rushing as I knew she would appear in the kitchen as I was plating up - I have developed anxiety around food, whether DD is there or not - probably PTSD.

What I will say is that as we challenged her rules they began to subside and now there are no ‘you’ve got seven potato wedges and I’ve got eight’ arguments anymore thankfully.

i haven’t slept properly since DD was diagnosed 18 months ago, the worry doesn’t leave me (usually it manifests at 4am in the morning). But we have managed holidays, city breaks in the car so we have an escape if things go bad - I was against this but DH booked and organised it and pushing through my anxiety about holidays and food was the real barrier - DD enjoyed herself (don’t think we’ll be getting on a plane anytime soon though).

There is an article I read in a psychology publication that is a difficult read as we care for our DC, but the writer talks about standing back and not to let the illness ruin our lives as it torments our DC’s - I will find and attach it in a post.

Hope dinner went well this evening for you, and everyone else struggling out there.

The title is hard but the article covers what I do, in that I believe that if I sacrifice my life it will somehow save my DD’s and that is not true - as parent carers we have to live as well, however if someone can tell me how to detach and be more self centred I am all ears!

https://www.psychologytoday.com/us/blog/hunger-artist/201502/you-can-t-save-your-child-their-anorexia?amp

Thank you D1ANA22 that is such an interesting read. I wish I could have been more laid back as I'm massively affected by dd's illness and not sure I'll ever fully get over it. However I am learning to push back a little and to not be afraid everytime she pushes me. I'm pleased with myself for not going to the shop yesterday and everything has been OK. I can build on that. I just need to not let the anxiety completely take over.
Holidays are not really possible for us right now as dd is so regimented with food and has crippling social anxiety, but we can manage the odd half day out as long as we're home for dinner!

Very dodgy ads linked to that article 🙄

As always I think there needs to be a balance and when our children are acutely unwell I think it's reasonable that we do sacrifice our own lives to care for them in the same way we would if they had any other life threatening illness.

That said in order to be able to fulfill our role as a carer we need to look after ourselves as well.

I don't really like that article tbh, it feels like she's dismissing the parents that have devoted their time to keeping their children alive when actually FBT is proven to be an effective treatment for anorexia.

There should be more support for the parents and carers, more education on distress tolerance and managing our own mental health in order to support our kids. I'm not sure the answer is to just get on with our lives and hope our girls decide recovery for themselves 🤷‍♀️

I agree @Girliefriendlikespuppies it's a difficult read and I am not sure I agree with it. I agree that carers need some time away from the day in day out hell of caring for someone with an ED but just getting on with life was not really an option for me.
My DD was 13. How could I leave her to 'get on with it and decide to recover'. She was a child. Even at 16 they are children. If she had got cancer or something as life threatening my life would have been over whilst i supported her recovery.
Over time I was able to build some time away in (an hour a week to begin with) but as her mum I believe my role was to sacrifice my life for a period to save hers. Just as i did when my middle son was desperately ill as a babay and my life was centred in hospital. And FBT does work! Maybe not for everyone.
Again i come back to the fact thar everyone's journey is different and unique. But to simply hope my child decided to recover was not something I could have lived with.

Hi everyone, I hadn't popped back on here as I was ashamed of myself for posting and sharing our story and I felt selfish, I'm usually the one helping others, so to be asking for help for our situation was not only very difficult writing everything down but also made me feel like I'm not strong enough to help my daughter. I feel like I'm failing her. I'm going to come back later today and respond to each of you individually, but just wanted to let you know I've seen your replies and I'm incredibly grateful for both the warm welcome I've received and the kindness you've shown me.

My heart is with each and every one of you who have a young person suffering from this condition, life can be so incredibly unfair and it's bad enough when something affects us as adults but when it's your child who is being tortured by this type of mental illness it causes it's own mental anguish in us as parents because there's no medication which can be taken, no magic wand to fix things. Watching your child basically self harm every second of every day by denying themselves a basic function, to take nutrition, is so bloody cruel, especially when as parents giving our children food and ensuring they aren't hungry is a way in which we show we love and care for them.

I'm silently sobbing now both out of desolation and sheer anger. I need to stop as my daughter is next to me in bed, fast asleep with all of her beloved plushies around her, wrapped up safely in her bed. When she sleeps, for the few hours she does, I sometimes lie staring at her, willing this awful illness out of her, visualising myself surrounding her with my love, every fibre of me praying to the universe that the struggles she has will ease. And that love and hope goes out to each of you and your children too.

I will return later this afternoon and get back to each of you who replied to me, I was overwhelmed that so many of you had done so, I didn't want to barge in as I'd obviously never been here before but I was at breaking point. Thank you again so, so much.

X

That's a horrible article - it basically says give up on your child until they're ready to accept help - possible ten years down the line. For some, their vital statistics would be so low if we did that they would never get to that point.

@AnArundelTomb we've all been there. We've all been that person coming on asking for help. That's why this thread is so good- people are so supportive and they're so much truth in saying that if you've not been there you can't understand what we're going through.
Even if we can't help practically, it's good to vent your feelings.
I an extremely fortunate. We went though what felt like two years of hell. Unlike the claims in that article, we were never given a psychiatrist for dd, nor referred for camhs or fbt. We ended up paying for private counselling sessions. Whether that was what helped we'll never know, but luckily dd was so determined to get to university that she worked with us to defeat the demons. I'm not saying her relationship with food is great now because i think there'll always be that niggle in her head, but she's coping really well.

Life completely stopped for me when dd got ill. Dh has managed to carry on which I get jealous about but it's good that he models a good work ethic and that we're not both dragged down by the illness - although he is desperately sad and misses his relationship with dd. We tried joint caring but dd for whatever reason completely shunned dh.

I gave up work and focused on her. She wasn't one of those that needed me physically by her, but she needed me in the house at all times. I managed one night out with a friend, leaving dd with very capable dh, and dd just kept messaging 'When will you be home'. I long for the days when she was managing mornings at college when although I was still anxious for her it felt like some normality. She hasn't managed to go for months now.

My mh is massively affected by being effectively trapped by dds illness. The support we could do with is some sort of centre where she could be with others and get some support and education I could get some respite. There's provision in my area for over 18s but nothing for under 18s. Dd does nothing and sees no one and the longer it goes on the worse it gets. We'd willingly throw money at it. I found counselling with great reviews and I've read great things about hypnotherapy but dd refuses to even talk about it.

Thank goodness for parents supporting parents on here and fb groups etc. I'd be lost without the support. I often wonder how carers coped before the Internet. It must have been a very lonely existence.

AnArundelTomb

You are not failing your dd at all. Caring for someone with ED is not something you can or should have to go through alone. It is by nature an illness which disrupts relationships and isolates people from their support network. Please keep reaching out whenever you need support or advice. Whatever particular issue you are facing you can guarantee someone here will have faced the same and can empathise and help.

@BagpussSaggyOldClothCat I couldnt agree more. I feel both your pain.

I feel broken inside. I feel like I can never trust either of my children to be OK again, or me. if I think about it too hard there's just this dark well of fear.
I actually work with teenagers in a field tangental to mental health and this has shaken my belief in myself to the core, as well as tanked my finances (self employed). Plus guilt - while I know it's not my fault, genetics, I am also very sensitive yada yada - the fact that I have 2 children who have had issues makes me feel like everyone is judging me. This thread has been a safe space for me as well as a fount of knowledge. Thank you everyone again and @Lottsbiffandsmudge the smoothie is going well!

I find no-one who hasn't been through it, gets it. My DH compares it to having children - you think you know, but until you actually have a child no-one can know how life altering it is. I have 2 friends I confided in, and at the beginning of the holidays we had a (very trying) day out where DD had just the one meltdown (pretty good considering it was pouring with rain and we had to cancel our activity and go to a pub with no cals on the menu). My friend turned to me and asked, "When are you going to cut the umbilical cord?"

She had listened to some of the nightmare stuff DD had been through... and thought that was an appropriate response. I was so gobsmacked and I finally and absolutely understood that no-one gets it unless they have a child with mental illness. She has been a rock in many ways but because I feel so dark inside I find it hard to forgive.

@AnArundelTomb Just wanted to say - sending love and support. You are not alone.
FWIW DH thought he got it, then read Eva Musby and GOT IT. I wonder if your DH might be up for doing that or watching some of her stuff on YouTube?

@myrtleWilson @NanFlanders I'd be up for the march too, please do get in touch.

@D1ANA22 interesting article, and there's a follow up here which is more nuanced if anyone is interested.

Like other have said, in crisis I don't think there is a choice. You do what you have to do in the moment. DD is still at primary school. She plays with teddies and enjoys Roblox. She worries about monsters under the bed. she is still at a stage in her maturation where I am the centre of her world. It could only ever have been down to me and DH.