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Desperate situation with DSC

(24 Posts)
Bambamrubblesmum Fri 03-Jun-16 22:59:07

Really need to talk if there is anyone out there.

DSD is going through treatment for an eating disorder. It is very serious and led to an emergency admission through A&E. She was released and has been assigned to an ED clinic for treatment. She exercises obsessively and is below six stone.

DH is beside himself with worry but is getting very little information as she is over 18. Ex swings between minimising and exaggeration and it's hard to know what is actually going on.

One day everything is fine, the next it's panic stations. I get that the ex is struggling with it and it's horrible for her but the mixed messages are making it hard to provide the right kind of support.

DH is now drawing back from encouraging physical activities when he sees her as he doesn't want to be an enabler to her excessive exercise behaviour. DSD has now refused to see DH because he won't do the physical activity she wants to do. Ex is backing up DSD saying it's fine and she should get to do what she wants to with him. But it's not fine. She's been fast tracked over others for a reason.

DH has said he wants to spend time with her and support her but just not do anything physical that would encourage the obsessive exercising.

I completely understand this is a very complex issue that needs to be handed delicately but we are at a loss as to what to do. DH recognises that he is talking to the illness at times because we've had some very manipulative texts from her and she has admitted to her treatment team that she is very good at lies and deceit to control her surroundings.

My DH is lost at sea and I don't know what to say. Sorry if I'm rambling I just hate to see him like this and I'm worried sad

Strawberryshortcake40 Fri 03-Jun-16 23:08:13

My DD is recovering from anorexia. It is a truly awful illness and getting her through it was the hardest thing I have ever done in my life. There are a lot of good books out there and blogs, these help a bit. The only thing that can get her better is food which is the one thing she doesn't want. My DD wasn't herself the majority of the time, we mainly spoke to the eating disorder for months. If you need any more help feel free to PM me. It must brai more difficult dealing with an 18+ over this as you can't make them do anything.

Bambamrubblesmum Fri 03-Jun-16 23:17:20

Thanks Strawberry. Good to hear she is recovering. It's a horrible illness that just makes you feel so helpless. sad

I really do feel for the ex but what can we do when she backs up DSD's compulsive behaviour. It's shocking the minimising that she is now doing. I get that she's scared and wants things to be normal but this is really serious. She's saying we should just go along with whatever DSD wants to do so as to not upset her. Even though it's destructive behaviour.

DSD has had a full on strop because DH has refused to do what she wants. What can we do?

DH is angry because ex told him how serious it is and now seems to be playing Disney mum. He's worried DSD is going to die.

Strawberryshortcake40 Fri 03-Jun-16 23:25:05

His ex is scared. I can't tell you how scary it is to see your child so mentally ill. My DD used to only be happy if she was allowed to not eat or to exercise, the rest of the time she was unpredictable, depressed, violent, all the most awful things.

My H and I had separated shortly before her diagnosis and it was hard working together on it but we had to. The only way to beat it is to be on the same page because anorexia has a way of figuring out a parents weaknesses and working on those. Your H needs to get as much information as he can and stay as calm as he can (and I know how hard that is). No exercise. 6 meals a day. I had to sit with my DD when she ate, not eating was not an option. Most meals took hours and I would then have to sit with her for half hour afterwards so she wasn't sick. We got rid of every food that was low fat and basically all ate all the time. If she puts on weight she will recover, her brain will reset itself once her bmi gets to normal.

Strawberryshortcake40 Fri 03-Jun-16 23:28:42

Oh and tell your H that it's not his DD who is having the strop, it's the eating disorder. My DD was vile in the things she said, she threatened to kill me one night (I slept in the kitchen with the dog), she hit, she swore, she tried to climb out of a moving car, out of windows, tried to stab her dad. None of it was her. It's very hard but you have to separate her from the ED. For now she's away for a bit and you have someone who looks like her and sometimes even seems like her. But until she gets better it won't be her. When she's recovered she won't remember this time, right now the ED is in charge.

Bambamrubblesmum Fri 03-Jun-16 23:34:46

It's really good to talk to you - thank you.

He's been very positive with her and very supportive, particularly in responding to text messages when she's got angry. He's done really well not to get angry and is getting better at spotting when the illness is talking.

We thought he was on the same page as ex until she starting minimising. She thinks DSD is recovering (it's only been weeks and she was only last week binging and purging through excessive exercise). Treatment hasn't even properly kicked in yet.

It must be so scary to watch your child go through this. I'm frightened watching DH go through it so God knows how they feel inside.

What can we do if she won't stay on the same page re: treatment?

Strawberryshortcake40 Fri 03-Jun-16 23:41:23

I'm not sure what you can do. H and I weren't on the same page, he minimised for quite a while because he couldn't accept she was that ill. But I just got on with her treatment on my own. I'm sure his ex does realise how serious it is but just can't cope with that. She will have a moment of realisation though I am sure.

It's good that your DH can tell when it's the ED, that's really important to be able to separate the two.

I'm sorry I can't offer any real solid advice. There are online resources out there, my DD had therapy but that was pretty much useless as their logic disappears when the illness takes hold. They just need food (sounds simplistic but it is the only thing that cures them).

Bambamrubblesmum Fri 03-Jun-16 23:51:20

Thanks Strawberry flowers

It's hard watching him being made out to be the bad guy when I strongly believe he is the only one thinking clearly at the moment. It's a lot of 'you've upset her you fix it' attitude when he's not agreed to do what DSD wants because he knows it's the illness rearing it's head and its dangerous obsessive behaviour.

He gets it in stereo poor bloke sad

Deep down we sort of knew this was coming as everything had to come to a head. We just wish we could get some information from the professionals about what's actually going on. Instead we get it through DSD and we know we're not getting the full story.

Strawberryshortcake40 Sat 04-Jun-16 00:00:47

Get on Amazon and order some books. Look for ones on the Maudesley method. Following that is hard, I adapted it as I couldvt make it work for us, but having that knowledge on his side will help your H. Good professional medical advice is very hard to get, it's an underfunded illness and we struggled to get any proper help. Reading books was all that helped me, knowing that helping my child get better at home gave her a 50% chance of recovery. It's 30% if they are hospitalised.

Arm yourselves with as much information as possible and do everything to get his ex to understand. Then it's a case of waging war against it.

Bambamrubblesmum Sat 04-Jun-16 04:56:03

Thanks again Strawberry. As you can see by the time I am up and worrying. Ironically DH is snoring next to me!

I had a feeling that this situation would arise someday. DSD is a lovely girl but control has always been a big issue for her. As long as she was in control of the situation she appeared to be happy. Obviously she wasn't happy underneath as we now know. This is the first time DH has said no to her and it seems to have sent her into a tail spin. Rather than getting support from ex to avoid destructive behaviours she seems to be encouraging and validating them sad

Ex has issues of her own surrounding MH so I know none of this is easy for her.

It's just such a mess. Every one seems to want to just minimise and pretend it's all okay when it is clearly not.

We are going to need to do some reading as you suggest. There is a lot of information on the Internet and we've been reading the clinic''s website about the treatment she will receive. I think both of them have misunderstood that the compulsive exercise is a key behaviour that is contributing to the illness. They seems to think it's all just psychological and her training won't be looked at.

It's like she's an alcoholic and she's got someone willing to keep handing her a bottle of vodka sad

Strawberryshortcake40 Sat 04-Jun-16 07:28:13

The exercise is absolutely key. I didn't understand that at first. My DD would run off ahead when we were out, go on the trampoline, dance, swim length after length. And I kept thinking how that showed she wasn't that ill because surely if she was she would have no energy. I had no idea how much that played in it. Banning any exercise at all made my DD furious. Because anorexia needs that.

My DD got sneaky. We started getting the food in here a bit but still her weight was going down. After every meal she had awful stomach pains and what she told us was constipation, so after half hour sitting after a meal she would go to the bathroom and be there for up to half an hour. When she got out she would be pale and shaking from what she said was the effort of going to the toilet. Meanwhile she was getting so weak she could no longer walk more than a few steps by evening time and was sobbing in pain from her aching muscles. It took me a month before I put two and two together. She was spending that time exercising. Jumping jacks. Sit ups. Running on the spot. She was so emaciated at that point even getting out of the shower was too much effort without help. Yet the anorexia still could make her do that.

No exercise at all. To an anorexic you are cutting off a huge need for them so she will be furious. But the risk of cardiac problems is massive. That is a big factor in the mortality rates, their hearts just cannot cope. The electrolytes in their bodies are all over the place and exercise is incredibly dangerous. My DD literally was made to sit on a sofa for months and I even had to have her sleeping in my room to stop her exercising at night.

Strawberryshortcake40 Sat 04-Jun-16 07:33:55

I sound like the voice of doom with this and I don't mean to. But nobody told me what this was really like. The only people I knew who had experience had DC who still had it years later and were in and out of hospital. I couldn't bear that thought. I wanted my daughter back before too much damage had been done. Everything I read said the quicker and harder it's tackled the better.

I don't view my DD as cured. I'm not sure I ever will. But she is herself again and we can be a family again.

2phat2phaf Sat 04-Jun-16 12:39:42

My heart breaks for all of you. I too have supported our 18 year old daughter through this awful illness and words just can't express the impact it had on us all. All I can say is that she can get better with love and support. If you are anywhere near Epsom I can give you the number of the therapist who saved our daughter's life. Have hope - three years after her collapse we have "our" daughter back again - and try and remember that it isn't your dsd talking to you now; as others have said, it's the illness.

Bambamrubblesmum Mon 06-Jun-16 07:35:14

I'm so scared. She looks worse than we thought possible. Poor DH was sobbing last night. I feel so helpless sad

I know this is misplaced but I'm so angry with her mother angry how can anyone minimise someone who looks like they are on the brink of death. She's saying she's got better over the last week. FFS this isn't a case of putting on a pound or two and everything is fine.

It's horrible and what's worse DSD pretends everything is fine. We sat there talking like we didn't have a care in world and we knew we were talking to the illness and being manipulated. We've been told not to challenge or confront her.

I'm going to ring a helpline today to get advice on what if anything we can do. We won't get the real story from DSD or her mother whilst both are wrestling their own MH issues. I just wish she was under 18 then DH would be in a stronger position to help.

Sorry to rant I've just never ever seen anyone this ill before who wasn't on life support. sad I wish they'd get her into residential care so they could give her proper help. She's 5 1/2 stone FFS how ill does she need to be???

Thanks for reading.

Bambamrubblesmum Mon 06-Jun-16 07:57:02

Sorry for ranting. This is the only safe place I have to vent.

2phat2phaf Mon 06-Jun-16 08:13:04

Look, it's ok for you and your husband to feel as you do. It would probably be odder id you didn't tbh. But as "that mum" she is probably utterly terrified of what might happen if she pushes back. I know I feared that our daughter would kill herself if I challenged her and that then her death would be all my fault. I very much blamed myself anyhow for the eating disorder, I shoukd have known, I should have been able to "cure" her etc etc. So don't be too hard on her, even though I know yiu want to ouck her up and give her a good shaking. Love to you. Don't know how to do the flowers thing and it's too early for wine.

2phat2phaf Mon 06-Jun-16 08:13:29

Lousy phone.

2phat2phaf Mon 06-Jun-16 08:19:28

Try beat. They have good stuff on there. And please remember that you and yiur poor husband didn't cause this. The bottom line is that your dsd has to want to be better. The lies and manipulation will continue until she does decide to try to save herself. Maybe hospitalisation will do that. And find someone for you and your dh to talk to if you can. X

Bambamrubblesmum Mon 06-Jun-16 09:34:32

2phat thanks. I get that she's really scared and doesn't know what to do. I really do. But having a go at us because we won't take her out to do physical exercise is beyond just being scared. She's said its got nothing to do with the illness which we and as pps have said is wrong. It has everything to do with the illness and is a compulsive behaviour to purge calories. She looks like any form of exercise could kill her.

I think the ex's own issues are clouding her judgement at the moment. She's got into complete denial about the whole thing.

It's scary and frightening but it's just too dangerous to not be listening to the professionals.

Unfortunately Beat aren't open yet so going to try a different helpline.

Hope nobody minds if I keep posting here? It's a release at the moment.

Do you think my DH and I should set up some counselling support so he can vent his feelings somewhere safe? Did it help you?

LakelandLassie Mon 06-Jun-16 10:48:10

Hi Bambam
I am also a parent to a teenager recovering from AN. My DD was 15 when diagnosed and we were very lucky to get access to the appropriate services quickly. I do appreciate your situation is different given the age of your DSD and that 'care' is divided between two households.

I found that emotionally, my DD was much younger than you would expect from a healthy 15yr old and I did struggle a bit in the beginning to remember that.
My DD also was a compulsive exerciser and like PP have said, had to be closely supervised 24/7 for a while. She would get very angry if not allowed to exercise, try to get out of the house, climb out of windows ect. I just kept repeating "I know this is really hard for you. I love you and as your mum it is my job to keep you safe. I will not let your illness harm you any more"

It was the same with mealtimes. I would spend hours reassuring her that we knew it was really hard for her but that we loved her and just wanted her to be happy and healthy again. You just have to get the food in anyway you can.

I would recommend the book by Eva Musby and have a look at her stuff on YouTube. Also the online forum from FEAST called 'Around the Dinner Table' was a godsend.

. My friends and family were very supportive but I found just being able to rant to others who knew exactly what we were going through was a live saver.

A year after diagnosis, My DD will happily scoff down a McDonalds (previously food of the Devil), can join her friends for a Nandos and after complaining bitterly for months about her hot chocolate made with full fat milk, actually admitted last night she prefers it to one made with just water!
You are at the beginning of a long and VERY HARD road but there is hope! Just get those calories into her anyway you can and feel free to rant here anytime. flowers

Theoscargoesto Mon 06-Jun-16 11:31:17

I too feel for you. My dd had anorexia, was in hospital for a year aged 15/16. Is now 24 and the demons are still there, though she is in control of them most of the time. You are right, exercise is dangerous, and anyone who says otherwise is wrong. One thing I'd say is, don't collude with the illness: it's easier to just say ok come for a walk with us, but your approach of, we love you, we'd like to see you but we won't be exercising with you is, imho, absolutely the right call. When you say you have been told not to challenge, who has that come from, the mum or the professionals?

Because she's an adult, you and your DH, and indeed her mum, may get little from the professionals, and you won't be entitled to any info unless your dsd agrees. But if she will, have joint meetings with the professionals so your can present a united front. As strawberry said, the illness is manipulative, and in its throes your dsd is likely to try to play the ends off against the middle. The only way to stop that is by working together, hard as that may be right now.

I've lived with this for bloody years and it's the hardest thing I have ever done. I got support form Beat message boards, I looked for support and asked for it, but the resources are so stretched that you have to find stuff for yourself and then ask, it's not offered, nor is information about what next, and when. I will happily offer whatever support I can, so do feel free to pm me.

2phat2phaf Mon 06-Jun-16 12:12:44

Of course, every family dynamic is different, but we played it like this: our daughter recognised eventually that she was ill, and when talking at with her we never pretended it was any other way - telling her that we recognised that it was her illness talking, not her. I also never lied about what calories I was giving her - I felt that she needed to be able to trust me. She was given a target number of calories to eat per day, and I made sure she had exactly that. It helped that she was a "good girl" - think school swot, and very disciplined, so when she was told how many calories to have she would follow instructions. It was only 300 cals per day to start with mind.

She too was a closet exerciser (before anorexia got a full grip on her, she was at ballet school, and exercise was a huge part of her daily life.) We probably couldn't have stopped her exercising completely, but we refused to enable her. When your DSD strops off, just remember that you two are the (only?) adults who are capable of making sane decisions. I always felt that our daughter had reverted to the terrible twos - all the veneer of adult norms was stripped away from her emotionally and the illness rendered her incapable of making sane choices for herself, so it was incumbent on us to act in her best interests.

However, we always assumed that she would get better and talked to her a lot about what she would be able to do in the future, once she was recovered. In our area, they don't hospitalise adult anorexics, and we always held back from sectioning (not sure if that is the right word anymore)but for our daughter the turning point was being offered occupational therapy so that she could learn to live the rest of her life with anorexia. That gave her enough of a lightbulb moment to enable her to start her recovery. And of course, once they have some calories inside them they can start to fight back.

I was too scared of going to counselling myself, because I felt that I was being judged, but with the benefit of hindsight, it would have helped me I think. It must be heartbreaking for you and DH to feel so powerless, and some kind of counselling might help you.

Keep posting. It can get better. x

Theoscargoesto Mon 06-Jun-16 17:29:29

Phat, we did have family therapy/counselling at the unit my dd was in and I signed up for some myself. It helped me understand that what was happening was not my fault, so for that alone it was beneficial.

I think too that building trust by always being honest is a really effective way of dealing with an ED. Again, in my experience, it is hard to do, but in the end the sufferer can see you have always been honest, and the ED has not, so it eventually pays dividends.

OP, family therapy is one of the things that they won't tell you is available, but it may be if you ask. It really isn't about the blame game, and we all found it helpful.

Bambamrubblesmum Thu 06-Oct-16 17:55:38

Quick update. DSD has started CBT and is under the care of the ED clinic. This has been good and bad. Good because she's finally getting treatment but bad because she's not really accepting what they are saying. She's talked about stopping the sessions because it doesn't apply to her. It definitely does and I suspect that she's fighting against it because she can't talk her way round them because they are experienced professionals.

She has been really keen to meet up with us recently and has been sending DH over the top gushing emails and texts about it. I've noticed that DSD tends to go completely overboard on any kind of communication. It's very high emotion (I love you loads and loads and loads kind of thing when youre talking about something very mundane). It comes across as very child like and desperate. In comparison youngest DSD (17) is a laid back easy going typical teenager and we tend to have much more natural conversations with her.

I get that she is probably very insecure so DH has been working on reassuring her and engaging in more adult conversations so they have a more adult supportive relationship where she can actually talk about her feelings. This has been an up and down process, when he's stuck to it they've had some really good heartfelt chats. However DSD keeps trying to go back to that child like state and they take a big step backwards which is sad.

Anyway after gushing about meeting up she's now saying that she's too tired to drive to the location we've all mutually agreed on when we meet up. We'll be meeting on a Sunday (she's not working on the Saturday) is in her early twenties and drives to other places. It's a few weeks away so not sure how she knows she will be too tired.

Probably sounds like she doesn't want to meet up right? But she's been so gushing about the whole thing I'm stumped. She says she really wants to see her half siblings, as does YDSD.

Before anyone suggests we drive down and pick her up we have two small kids so this won't be possible with child seats in the back and so she'd have to drive anyway to a location near her so both DSDs can meet up with us.

I'm not sure how to handle this situation. Seems like a minor thing but my gut feeling is there's more going on underneath that's related to the illness.

Not sure whether it's her or the illness we are talking to sometimes sad

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