Support thread 16 for parents and carers of young people with an eating disorder

[Mummyoflittledragon]

The old thread is almost full. I hope no one minds me starting a new one…

@Mummyoflittledragon does DD want to work?!?!

@Mummyoflittledragon I think it’s up to your dd isn’t it? I think you are over thinking it a bit, having a job and an earning her own money might really help her confidence.

I’ve just heard from my dd who sounds very upbeat, she’s been out with some new uni friends last night and met up with a boy today and had a dinner date with another friend. All sounds good so I’m enjoying the peace for a bit.

@Girliefriendlikespuppies
That’s wonderful news. What a relief that your dd is feeling better and now taking full advantage of student life. She sounds like a tough cookie. And maybe a bit of romance on the horizon would be lovely. And now all of your hard work is paying off, so you can relax a little.

As for my dd. She said she does. The issue is that she doesn’t actually have the concept of what work involves. When she was assessed in March for autism, the assessor quite bluntly said she doesn’t have a clue how a day runs, how to look after herself, how to feed herself and so forth.

She’s come so far in 7 months and is taking care of herself to a fashion. It just seems such a lot already, especially as she’s not even really started studying. I do understand it’s her choice. And I agree if handled properly, it could do wonders for her confidence. I’m just concerned that if she takes a job on without thought of her needs, she may crumble. The autism and severe ADHD really complicate things.

Personally, I think it would be more beneficial for her to do a few shifts helping out in a charity shop or rescue centre first to build her confidence and skill set first.

I’m going to have a think about it. I really don’t want to hold her back. Dh is speaking to the coach on Tuesday. I think I’m going to have a quick chat about it with her.

Mummyoflittledragon
My name refers to dd2 who has insight in her ED, and who wants to get better. However she won't talk to me about it, never has. FBT was not an option. That doesn't mean I can't talk and say eg, don't forget snacks, don't forget to see gp , hope your weight is fine etc. But I try to not say /ask too much. So this is what I was referring to in my earlier posts.

I have another older dd with ED, who after 10 years, still denies she has a ED problem (and she ticks all the boxes for autism). Even when fainting, low heart rate etc. Never got her to see gp, let alone any other help.

Although I know she is underweight, I try not to nag her, as our relationship would just deteriorate further.
I could/ would not stop her from going to uni, work etc etc.
So rather than telling her what to do or not do do, I just try and support her decisions other ways.
She suddenly pulled out of uni for a year(without discussing...). Others advised me I should not give her any money to support herself. But I did, so it would be one less problem for her to sort out.

I still send her lots of cards, puzzles, brownies etc.

Sorry, long ramble. Just trying to say, as they get older it's more difficult to handle it.
It is indeed let them make their own mistakes. And try and support them in their choices.
And trust me, I've been to A&E, had the threat of admission, the sleepless nights (still have, this is when I'm on this thread to try and find useful tips advice) .

So lovely to read about your DD surprising you with a visit and hugging you and chatting to you @Mummyoflittledragon

My DD recently said, while rolling her eyes, 'i don't suppose I'm allowed to get a job' and I said that I wouldn't rule it out. For us it feels like she's been making progress recently and I want her to see that normal life comes back with weight restoration. I can't deny I'd be worried if she actually got one though. It would be a lot on top of just starting college. As ever it's such a tricky balance for us with our kids isn't it? Like walking a tightrope.

Is there potential for her to ease in to this job with a small amount of hours initially?

Having a job is one of the things that kept dd motivated and it also helped keep her mind busy, she definitely does better when she has stuff to do.

@Mummyoflittledragon id follow her lead, if she wants to try it then support her. Worse case scenario she doesn’t like it and only does a few shifts. Best case scenario she enjoys it, learns new skills, earns some money, makes new friends etc.

My dd wants to find a job near the university but I’m not sure it will be easy as there’s a lot of students all thinking the same thing. She still has her old job which she can come back to in the holidays to earn some extra money.

@Mummyoflittledragon i wanted to add, you are usually spot on with your daughter. She is doing so well. We don’t want anything to change that. If she was mine I wouldn’t want her working around food, as it’s so high pace etc she might not have chance to eat what she wants when she wants. I totally get your reservations about this.

However, I also think you would tell us not to rock the boat about this. She is doing so well and saying no might push her into doing to. FWIW I would be very surprised if she wants to work in a posh restaurant! Xx

I think that's what would concern me more than anything @Mummyoflittledragon , not that she couldn't necessarily manage any job but I would imagine it's really, really difficult for an anorexic young person to work in a food related role. Your husband generally sounds less clued in than you do though (as is mine), so I'd trust your own judgement.

@Mummyoflittledragon I agree with @StressedANmum

I think most husbands just want to think everything will be ok, where as we know all we’ve done to get this far!

@Mummyoflittledragon just realised I missed your message the other day, yes, it's definitely easier if they're a little less independent at this stage, DD was ok with limited involvement for a long time (eg she wouldn't do family therapy but she would let her psychiatrist talk to me) so I hope that will continue, she's got more open during the time she's been in inpatients. I was very glad to read about your DD's visit this weekend, that must have been very reassuring.

Fingers crossed DD will be discharged from inpatients this afternoon. Adult services take over in a couple weeks, we met her new therapist on Friday and she seems very nice, but it will just be the one appointment per week, there doesn't seem to be dietician involvement or anything like that. We'll see how it goes. We had a good weekend, she ate reasonably well, so let's hope that continues.

@StressedANmum today is the day! I’m so pleased for you all. Please let us know how it goes. How are you feeling? You have been strong and resilient for the last few months.

Feeling like you have to carry things now can be hard. Just because there aren’t plans in place atm, probably means they don’t think they are needed. Your daughter has learnt a lot during her time there. Please remember you can ask for more support if and when you need it.

For now, treasure having your daughter home, and take strength in knowing we’re all here for you, and we’re incredibly proud of you both xx

I hope it goes well @StressedANmum - I imagine it's a real mix of relief and worry to have her coming home!

Thanks @Pearl97 and @Weightlossworried for those very kind messages, the support on here from people who really knows what you're going through has been so, so valuable. She's home, all the professionals involved at the discharge meeting said lovely things about her and how hard she's worked, and they were very positive about her chances of doing well in the future so I am holding on tight to that, even though I am worried about sustaining her eating at home.

She is glad to be home in one level but also apprehensive about getting back to real life. Her confidence and self-esteem are very low, both in terms of how she feels about her body and about her education/abilities, so we'll have to work on that. Trying to find some social activities for her will be a big thing, she needs friends more than anything else at the moment I think.

@StressedANmum
I’m so glad that your dd is home. And I’m crossing all my fingers that she will adapt to all the changes, including sustaining her eating, and let you continue to be involved.

My dd has suffered a lot with low self esteem around herself and her abilities. I imagine it’s something most, if not all, of our young people face. And I’ve really noticed what a positive attitude you have about your dd and her struggles (far more than me) and all that hard work will pay off. And I really feel that you can do this.

It’s tricky now that your dd is basically an adult to find things, she will like to do to socialise with her peers and a relatively sedentary activity. As she’s year 13, I imagine most clubs keep young people for the duration of the year, despite having turned 18. I was trying to rack my brains as to what I’d have suggested for my dd. Maybe something like a musical theatre group or or rangers? Xx

@Anothersetback
Oh my word, I had no idea your older dd has been suffering like this and for so long. You must be exhausted with it all. I agree it’s difficult to handle as they get older. And thank you for sharing your thoughts.

Tbh I couldn’t tell my dd to do something if I tried. She has a lot of demand avoidance. And she is very selfish atm. I’m not even sure that she’s work ready as she can’t stick to her agreements with us. Dh was on the phone with her yesterday evening. He has booked to take her to London for her passport Thursday and she’s now mithering, because of a rugby match and clubbing. This is exactly what happened around the funeral a couple of weeks ago and I ended up collecting her at about 7.30pm (after the ‘obligatory’ rugby match) as I wanted to make sure she’d be home ok the day before we flew out.

@Girliefriendlikespuppies
I agree there are so many benefits to working. It’s great that your dd has a job to come back to. I tried to encourage dd to get a job in the summer holidays this year, but she wouldn’t entertain the idea.

I can’t see my dd wanting to live part of the time and work weekends, especially over Christmas during the 4 week break, which at dd’s stage of recovery could be very tricky. Tbh following my dd’s lead wrt to the job, it’s likely she will forget all about it. So I might just encourage dh to do that!

@Pearl97 @StressedANmum
Because dd’s ED is basically ARFID that tipped into anorexia, working around food doesn’t concern me too much. It’s more the ARFID angle. Will the chef prepare food that she would actually eat? And eat enough. My dd likes to think of herself as posh and that will appeal. But I don’t think she’d choose a restaurant. A hotel receptionist type job or something in beauty, events etc would be more her thing. But it’s tricky to get a job as a student, let alone choose one.

And this is all academic anyway. Would a posh restaurant even want to employ someone, who’s never worked when they’ll have the pick of the bunch? And this has given me a bit of a light bulb moment. My cousin’s dd was spa manager in a hotel and has recently been promoted to regional manager, including the one in our city. She could give dd some tips at the very least, maybe steer her towards looking for something more suitable for her.

@Weightlossworried
If your dd is recovered enough to work, I agree with you about letting her, yes. For all the reasons above. And working is great for socialising with your peers. Hospitality seems to be the best for that unfortunately. I did actually suggest dd find a more sedentary job in year 13, such as hotel receptionist etc, but she refused. Is there anything like that your dd could do? As for my dd, I can’t imagine a restaurant would be up for easing dd gently into a role in the run up to the busiest period. But yes, easing into a role would definitely be useful for all our kids!

I think a lot of our adult/near adult DC are in that uncomfortable middle ground where they are not in the acute weighloss phase but we could also not describe them as recovered. When you have done so much and they have depended so much on you its hard to imagine them as capable. I have a dear friend with lifetime anorexia who has reminded me anorexic people can achieve a lot, and that it hurts them if the people who care about them don't believe that. I try and remember this even though i find it hard to feel it!

With adults I think all we can and should do is try and show what a good, healthy life is, keep our eyes open for deterioriation and give support and advice if its asked for. Its worth remembering that all the stuff we are taught around communication has no evidence around it in terms of benefiting adults with EDs. If we're not being actively unhelpful, picking fights with them over food, going on about their appearance, being in conflict or chaos, we are doing good. We are good people, good parents, our influence over this disease is limited but we can contribute positively to our adult kids' lives.

My own dc has also started talking about work. Which is a huge shift and they are not anywhere near well. I hope they enjoy it and all your dc too

@Mummyoflittledragon I can see why this wouldn't be the best job for your DD. It's probably a good thing if she just forgets about it. I actually think for most kids it's good for them to just get used to uni life for a bit first before adding in a job - if they're lucky enough to be able to do that financially of course.

Part of the reason I was quite relaxed about the idea of my DD getting a job is because they're slim pickings round here. It took her siblings the best part of a year to get a job at the same age. If it takes her a similar amount of time to find one, I have to believe there's a chance DD will be in a better place by then.

@unbuckle that's so true. I also have a friend with anorexia who leads a full life in many ways and has achieved a lot. I hope your DC finds work and that it helps them, if not with recovery, with leading a more full and happy life.

My DD17 has a job, in a food outlet, and it's been great for her. The early starts / after school shifts can be challenge for getting her to eat, but we manage. She won't eat anything she makes / sells, but being around the food isn't an issue. As she doesn't want to do uni, and we agree doing that next year wouldn't be wise, it's good to know she has at least something that could continue to next year.

That wouldn't work for everyone though I know, hope things have setled @Mummyoflittledragon

So lovely to hear the updates of people flourishing/ finding new friends / coming home.

It's camhs day again for us today, and for some reason I'm finding this one tense. DD had a loss last time, and I'm very anxious as to what happens next if she has another one. She's eating pretty well, limited, and challenging at times, but 3 meals a day and copious snacks when she exercises. She's really tried hard with extra snacks after exercise since last time, and getting through lunch at school. But she is very into her running, doing 20km a couple of times, and her fear foods include a lot of high calorie things, so the balance probably isn't quite right. I've talked to her about the exercise and she's sure it's not the same as when she first got ill and got quite gym obsessed. It's not as frequent (max twice a week, only one long one), not for as long, and she says it just feels different in terms of control. So long term it probably is fine, but short term they may ask her to reduce it until she can up her intake in terms of higher calorie foods, and she'll find that hard as it's her time out, her release, and her joy.
She's going on her own, and it's a newish counsellor. I know we need to let her do that and take control, and I know they'll contact us if there's a real issue, but it's not easy to focus at work in the mean time! Just hoping DH is right and she'll have restored or stayed the same since last time and we can tweak things at her pace without a medical concern or anything drastic needing to change today

@unbuckle
You are right about showing our dc a healthy lifestyle. I’m trying. I really am. I’m not physically well myself, so that’s really hard. I also agree very much with what we have been taught often isn’t useful for our unwell dc.

Dd has a lot of challenges, not just university and her ED. She’s missed such a lot of worldly education and really doesn’t get a lot of how the world works. I am trying as much as possible to just connect with her, so that I can slowly drip in the gaps. And the rest, she will hopefully find out for herself.

It sounds as if there are a lot of changes with you at the moment and I hope for your dc sake that if they do manage to find a job, that it will nudge them further towards recovery.

@Weightlossworried
I can imagine a job a year in the future would look far easier than right now for your dd. Hopefully she will find something when the time is right.

Dh and I spoke to the coach yesterday and she was just of the opinion a restaurant isn’t a bad place to start. They will start new recruits from scratch and are used to dealing with teens / young adults. So won’t be expecting fantastic customer service until trained, whereas in a hotel or spa, they’ll expect a lot more. And any gaps will be very obvious.

I did point out my concern regarding Christmas working and left the conversation at that point as it was dh’s session, so idk what was discussed afterwards. He’s picking her up just now, so I’m just leaving them to it.

@LurkyLurkyLou
It’s good to know your dd is doing well in a food environment. It sounds as if she has a better understanding of herself than my dd does right now.

Unfortunately, dd doesn’t have a lot of the skills she should have picked up from 14-18. Back when she got to about year 10, I really started asking myself why she didn’t know stuff, which her friends had just naturally picked up. Then the illness started in year 11. And now I know dd has SEN, I get that she needs to actively be taught stuff or copy others.

You are also helping your dd to manage her time. My dd really could do with that as well. But doesn’t want help. And finding time to eat is my concern. She still needs cues to think about eating, because otherwise she just forgets and then becomes ravenous. And a lot of that will be doing as her friends do. And eating during the breaks in lectures. But when she’s not in that routine, like tomorrow in London, it needs subtley handling.

@LurkyLurkyLou
I realise I didn’t say anything about CAMHS and your dd’s exercise. That sounds pretty extreme when her eating is still not normalised. I’d be concerned about long term sustainability of eating patterns, additional snacks etc and potential relapse. I imagine she’s discussed it with them now. Is she allowing you to be involved in those conversations?

Just reading all the posts. Some sound so positive. I am really interested in the moving on to uni ones also as my DD is mainly motivated by uni applications and opening up her life. Right now it would be a disaster but hopefully something to work to.
Bit of an update she was discharged on her 18th birthday. There was a lot of talk of staying under section in adults but has thankfully been given the opportunity to try in the community. Inpatient has saved her life undoubtably but she is now left with extreme trauma. She made it up to 75% wfh for discharge which is so low but a massive improvement. She looks and feels so much healthier. There is some change in cognitions also. Now attempting to do year 13 as she has just about kept up with self study and the hospital school.
we have been lucky with brilliant care from Camhs and a transition to adults which seem equally as good. A totally different approach which so far is much better suited to her. So we remain hopeful. Taking very very small steps in the right direction.
the first week or two at home was terrifying and felt quite unmanageable at times but now 3-4 weeks in everyone is adjusting. It’s going to be a long process but I do have hope.

@Tops16 thats such a positive update, great to hear about all those steps forward and consistent support.

Thanks @Mummyoflittledragon . It is true DD does have a good understanding of herself, and you're right her letting us input in organising her time and eating is a positive. She has school and social things the next couple of evenings which we're planning for together, we would have done pre ED tbf but its more complex now of course and more vital
Her appointment went well, a small restoration thankfully. They did discuss exercise and she has shared the agreed reduction, and snack changes. We have monthly FBT around her solo appointments, and often take her to her solo ones so have a brief word when needed, so we feel she's being honest about what was agreed.
She had a v flat spell tonight, which is normal post camhs, but then perked up over dinner and chose to just pop to the shops with DH rather than run or swim. Finding other ways to perk up her MH and more robust snacks are both priorities as you're right it isn't sustainable without changes, but for now at least we've pulled back from a potential decline thank goodness

I have just been reading through some of the latest posts. All seem to reflect the strength and patience required to help our loved ones through changes and challenges in their lives, often whilst in the grips of EDs.

My son has had a bit of a relapse. At the moment, we are focusing on his physical health and it is touch and go whether he has to go to hospital for a short stay. I am just staying with him throughout the day as a supportive presence, but the consultant psychiatrist and ED team are having a meeting next week. Hopefully, he will have had a few 'better' days by then.

The disturbing ECG and threats of sectioning do seem to be acting as a deterrent with respect to his ED behaviours at the moment.

@Tops16
It’s really good to hear that your dd was doing well enough for discharge, if a long way to go. From what you’ve said, she seems pretty aware of the situation right now. Hopefully adult services will keep her going for the hard slog of study and exams. Year 13 is a really tough year. Bless her.

Does she yet want to gain weight? That’s such a hard one.

@LurkyLurkyLou
It’s great your dd has taken on board that she’s been pushing herself hard. A bit of time to centre and focus on herself, her mental health, rather than exercise would be a good thing I think. As for finding things your dd will eat, that is always such a tough gig. At least for now she is listening, and will hopefully take on board that she needs to expand her repertoire of foods, to keep herself on an even keel.

@sum12luv
I am so sorry your ds is still struggling so much. It is so hard. Idk how you feel about him being admitted again. I think it must be very hard, because of how he was the last time. I hope he will manage to pull himself back around. And that you are taking the time to look after yourself.

I wondered, how do you guys respond when your dc are unpleasant to you? Mine gets shitty immediately if I try to engage on anything on my terms, rather than me speaking when I am spoken to. I think that's why I find it amazing when you guys describe advice you've given or boundaries you have set, I wouldn't get to the end of a sentence! Today for the first time I said I don't deserve to be spoken to like that.

@unbuckle I think it depends a bit on the situation, if I was trying to get dd to eat something and she told me to go fuck myself and wished I was dead I’d not respond.

If it was in any other scenario there would be consequences but it always felt unfair to punish dd when it was the ED making her behave like that iyswim?