Should I have Left Son with ED Alone?

[autologo]

I have mixed feelings about a situation that occurred yesterday, so I would appreciate a fresh perspective.

My 22 year old son lives with me. He has a serious eating disorder, so Christmas is hard for him. However, we were invited to join my sister for Christmas lunch.

I wanted to go to the lunch, and I discussed the visit with my son. He did not want to go, and I accepted that a noisy event, centred around food, may be a bit much for him. We agreed that I would go, and then we would have our usual meal together when I returned.

The Christmas meal was fantastic. I did not eat much because I would be eating later with my son, but I really enjoyed the company and seeing my elderly mother (95) and new great niece together. Times like these are precious.

About two hours into the event, my son phoned me. He told me he had eaten everything in the house, including food I had 'hidden' (that was our meal!) and he wanted me to come back home. He said he had been making himself sick (he has bulimia). The food was basic stock (bread, tins of beans etc)

I do not drive, so I would have to ask someone to give me a lift and this would ruin the event, so I told my son to wait until my brother was ready to drop me off.

In another hour, my brother was ready to leave, because our mother was getting tired. He dropped me off at my house on the way back.

The scene in my house was atrocious. My son had brought bin bags in to find food that had been discarded. There was a stench of sick. There were filthy pots everywhere.

He was really upset. I talked to him. He was smashing his hand against a cupboard door and broke the door. Finally, after he had tidied up (he has to clean up his mess), he insisted on going for a walk.

He set off at 9 pm and did not return until nearly 1 am. We talked for two hours on the phone.

Although I really enjoyed the Christmas event with my sister, I just wonder if perhaps I was negligent in leaving my son alone on Christmas Day.

OP you absolutely did the right thing in spending time with your wider family.
I haven’t read the full thread but, in answer to the many posters who advise that you get professional help for your son, this is almost impossible to access for many people in your son’s situation. Help is extremely limited and often ineffectual.
I was lucky that when I had bulimia there was longterm counselling and treatment available, which is no longer the case.
I was extremely secretive and hid all evidence of my bulimia, so the thought of telling someone and leaving the mess visible is impossible to me. But I imagine that by leaving the evidence for you to see he is saying ‘look at me, look at how out of control and unhappy I am, help me’.
I think that all you can really do is to constantly affirm your love for him, let him know how proud of him you are for every small victory he has in fighting his eating disorder, keep telling him that he is a worthwhile person, and praising him and letting him know his value to you and everyone who loves him.
In practical terms, you cannot supervise him all the time. All you can do is help him make and eat regular meals filled with good nutrition and protein and vegetables in order to minimise physical triggers for his binges.
You can’t help him if you are run ragged yourself. You need to spend time away from him to recharge and to be you, to laugh and have normal conversations with people you love. By doing that you are ultimately strengthening yourself to help him, and modelling a normal life to him. It is very easy to become entirely immersed in his skewed world but that won’t help him.
Give him a hug and try to do something nice with him today and tell him you love him. You didn’t do anything wrong.

I have corrected and apologised read dh not ds .

I don’t have one either no judgement !

Years ago now I went to a live -in course for people with bulimia and with the many people there I don’t recall anyone being so out of control. Yes the eating and purging was constant but it wasn’t raging ‘bull in a China shop ‘through any food to be seen. I think bulimia may be a facet of your son’s mental health problems but there is much more going on. The crisis team is a good option if you can but be wary of calling this bulimia, you might just end up seeing a dietitian dependent on the help available in your region.

Yes, some people are like him. I assume he does already have a diagnosis of bulimia. What OP describes is bulimia in every way, just a hardcore manifestation of it- people often go through phases where it has varying degrees of intensity.

This doesn't mean a person doesn't possibly also have other comorbid conditions alongside it. That's quite common.

You deserve to enjoy your day with your Mum. Let go of the guilt you are feeling it won't help either you or your son. You having a rubbish time is not going to fix him.

@Helenahandkart thank you for sharing your insights: your post is very helpful as someone living in the trenches with an ED.

My heart is so sad for you and your son. My DS has gone through ED too, it is utterly heartbreaking.

Sorry, I can offer no words of help, just know he will get through this with help and I hope so much that this happens soon.

You are doing an excellent job of both supporting him and trying to still live your own life, whilst this illness that is like a huge, black spider tries to encroach on every aspect. Keep going @autologo and son - you will get there xx

Interesting article but there has to be more to it than that. My son had medically induced anorexia last year (so not nervosa), and in all spent 4- 5 months not eating normally, not eating at all or being tube fed. As soon as the physical illness was treated and he was able to eat without pain, he resumed eating normally and has ever since. None of the "habits" around anorexic eating persisted at all, perhaps because his decline was extremely rapid (6 weeks) and because there was no underlying psychological issue? It's also true that he was able to access treatment extremely quickly so the "starvation" phase of the illness was very short (unlike with many anorexia nervosa sufferers who are left to decline and decline).

@Tacotortoise So glad if your son's better. x

@WhompingWillows
Thank you.
When I had bulimia (and throughout my life, but particularly so during the ED years) I had horrifically low self-esteem and was consumed with shame and self-doubt about everything all the time. I had nothing to bolster me and no one telling me positive things about myself. I think it is absolutely essential to treat ED sufferers with love and pride and try to assuage their feelings of shame. All I wanted was for someone to notice how broken I was, and to feel worthwhile.
I second the PP who mentioned autism. EDs are often tied in to autism and ADHD, and ADHD medications can be helpful in reducing the binges.
I was undiagnosed with autism until many years later, but wonder if my treatment would have been more effective if it had been recognised at that point.
The brain of someone with a serious ED is a mess. Yes, their behaviour could be construed as manipulative, but it is not intentionally so. They are desperate for help, and doing whatever makes sense to them.

I will try to answer some of the questions.

1. Where is my DH? - in a care home (mental illness compounded by autism).
2. Is your DS autistic? - professionals think so, but he declines formal assessment.
3. Are other professionals involved? - I have explained this, but others are correct in stating that the dangers of bulimia are perhaps less widely known. I contacted his MH team and a social worker because, I feel totally alone with this, and terrified that he will die whilst in my 'care'. Others who are in a similar situation and who have posted on this thread will understand that feeling.
4. Was he sick elsewhere in the house - Yes, the kitchen sink. He cleaned it up, He cleans obsessionally, this can be a trait associated with EDs or it may be cooccurring OCD
5. Am I his carer? No - I am his mother. That is to say, I do not claim carer's allowance for him. I work from home and combine that with supporting him.
6. Why have you posted on AIBU - I answered that earlier, but I want to give another answer. What the hell not? EDs have been stigmatised for years (Yes, I had one when I was younger). Manipulation? Dirty protest? No! it is nothing to do with that. Neither am I 'shaming' him by writing anonymously about the situation on this particular forum. Yet, if the discussion of what life is like living with someone who has this sort of ED is not discussed openly, it will remain secluded on a less public forum. It will remain a shameful, embarrassing subject. So, I will state this: there are people who are totally trapped by their EDs, and their families can become trapped.
7. Have I reached out to BEAT? Yes, they gave me some helpful counselling, but they could not offer support to my son because the ED was too serious (and he was not likely to engage). He needed help from the specialist ED team.

@autologo you did the right thing to go. It's exposed how bad things are with your son and hopefully professional help can intensify to assist him.

Re "He neds a team around him. He has been referred to the specialist eating disorder team, and I contacted a social worker who has been involved in his support, shortly before Christmas, about similar incidents, and she has raised a safeguarding issue. As other have said, the wheels of support move slowly.2

they do indeed.

I've been waiting for almost a year and a half with CAMHS and am told the wait is 4 years!

However, I think keeping whatever mental health services are engaged apprised of relevant updates is important, This is a major update.

It's such a shame he didn't feel able to do the two hour or four hour walk first while you were out.

I have quite mild OCD, which led to an eating disorder, nothing at all like your sons, but affecting me and my health none the less, which started when I was about your son's age.

I've had lots of counselling and help. A combination of NHS, (CBT for anxiety) and some counselling free from my workplace.

Some employers do offer medical help, including stuff like mental health assistance, maybe by phone or internet, for employees and maybe also for employee family. Perhaps worth looking into, if you have not done so already.

have you contacted BEAT - https://www.beateatingdisorders.org.uk/

beat (formerly eating disorders association)

I just hope your son can get the right help. A phrase that we used in my course a while back was 'urge surfing' where you kind of keep the eating urges at bay. Had he managed the walk first, before you came home, he could have used that time to get fresh air etc and perhaps tire himself out a little.

You did the right thing but that must have been horrific to come home to. So so hard.

no words. good luck

Just to say that manipulation etc is very much a part of many mental health and addictive disorders, it's not to blame the person themselves. I think it is part of the discorded behaviour, a kind of self-survival thing which, I think goes almost a self destructive (self-sabotage kind of thing).

None of this is to shame the son, but it helps to understand the behaviour I think.

almost a hand-in-hand with...

I don't think most people with mental health problems (or their diseases as supposed independent entities) are manipulative (except maybe personality disorders.) The MH problems just happen to unfortunately have a knock on effect on loved ones.

that's just my opinion!

https://www.psychologytoday.com/gb/blog/when-food-is-family/201509/manipulation-in-families-eating-disorders

I think this is a wake up call for how urgently he needs help. Outside help.

"Many professionals who treat people with eating disorders also describe them as being highly manipulative. While this may be how their child’s behavior makes them feel, I typically caution parents (and professionals) to be wary of using the term “manipulative” when describing a person with an eating disorder. Here’s why:
Manipulative behavior is often a camouflaged way to get needs met, just as the eating disorder is. Opening up and asking for what they need is often much more emotionally complicated for someone who has an eating disorder than going about getting those needs met in less direct, more “manipulative” ways. Just wanting something can cause guilt or shame. Looking at and learning how to cope with these feelings is simply too difficult, thus the person seeks ways to get her needs met that don’t require confronting her emotions. In other cases, the manipulation is an attempt to express hostility that cannot otherwise be expressed. Some wish to control others through manipulation just as they have felt controlled. In all of these cases, what we see is that “manipulation” is not the outcome of some kind of internal personal defect, but rather a complex behavioral response to emotions."

So it's not, I think, manipulated behaviour like an internal thing but a complex cry for help.

Your son is coming to rely on you as the circuit breaker for his illness. He relies on you to help him manage himself. So when you are not present he “can’t” or “won’t” depending on how you see this illness. He needs coping mechanisms and supports other than you so that you can feel safe leaving him alone.

That quote was from the article, so not to blame the young person.

And the article is about children and the op's son is an adult so the help may be tailored to an adult.

My SIL (now in her 50s) has had an ED on and off for 30 yrs and much of what has been said on this thread is familiar. There is most definitely manipulation but it is somewhat unconcious, though DH is aware of it and will sometimes point it out to his parents, who still bend over backwards to keep SIL 'happy' without giving her the space to grow [up]. It makes family gatherings very fraught! She knows how to push their buttons and has the emotional range of an adolescent but her parents have enabled it. You did the right thing OP by having some time for yourself.

It may not be a choice but the treatment of it is all about choices. He is the only person who controls this .

Reading what OP said, it seemed to me there was an intention to control her in his actions which implies choice.

I expect he has psychiatric help OP?

That sounds awful for you both, but it's done now.

Of course, you want to know what would be best to do next time. However, next time won't be the same as this time, because "this time" happened and that experience has changed both of you.

Perhaps the takeaway is that it was a bigger deal than you both realised, and a lot more work needed to be put in beforehand to avoid the disaster. What that work might be, I'm not qualified to say.

But even getting DS more in touch with his feelings so he could say, "I honestly don't think I'll be ok, can we think of something which will work for both of us?" would help. He's only 22 though - technically an adult, but neurologically, still developing for years to come :/

Who do you think it has woken up?
The OP knows her son needs help.
The son will know on at least some level that he needs help.

And what help do you think this can instigate?