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.

@autologo you’re right. I had experience of mental health care 30 years ago. There were many flaws in the system…but there were places to go for inpatient treatment and respite.
It’s a shame we don’t have a combination of that inpatient care (which seemed more readily available 30 years ago) but with the insight and understanding of mental health illness today.

You aren't being negligent OP. Definitely get any help that's going. I would also strongly suggest Overeaters Anonymous. Your son has to take the decision to go but it does help (modelled on AA but for those addicted to food)

We parent/carers with no support are forced into relational roles we don't want to occupy.

Perhaps to your son it feels like a warder/prisoner relationship (underneath the mother/son relationship) because you are also his carer. So he is reacting to the absence of a warden allowing unrestricted behaviour rather than trying to control you as a mother.

But you are acting as warden/mother/carer whilst dealing with your own issues and trying to get support for him.

You can't do more but the system can.

Good god, you poor woman. This sounds utterly horrendous - awful for your daughter but just as much for you and dd2. This is the saddest post I’ve read in a long time

So sorry!
you have not done anything wrong. It
sounds very stressful and I hope you can get access to the help he needs.

Name change for this:
I couldn't read and run. I am supporting my DS, 24 who has an eating disorder, (bulimia and restrictive eating.) I also had an terrible ED from aged 15 -22 (bulimia) which developed after a siblings unexpected death when my family "shut down ". No one ever mentioned my ED apart from my mother asking me not to be sick "please". Recognition of emotional distress was non existent, but after developing seizures I was referred for investigations. Again, no one ever mention ED. I gradually recovered after having first child (disaster marriage), and finding someone else needed me. Even then, nothing could stop me bingeing and purging when I felt sad and alone. I didn't mean to hurt anyone. I was in pain and couldn't express that because of the pain of others surrounding me, not wanting to upset anyone.

I am supporting DS as I recognise that he is in pain. I've had major anxiety through dealing with his illness and have had fantastic support from the BEAT Nexus programme. Without that support I don't know how I and my family would be able to cope. BEAT's support has hugely benefited myself and DS. We are not recovered yet but on the way and have developed tactics to cope with difficult situations (such as the OP had when meeting family at Christmas).

As previous posters have said there is little or no NHS support for adults with ED and therapy is very hit and miss. It is left to family to support our loved ones - if we didn't do it who would? Particularly with bulimia and binge eating disorder, where there is often a healthy BMI; recognition of the dangerous nature of these conditions, the risks to health, (seizures, cardiac arrest etc) is not widespread. Having personal experience like the OP, I understand the risks, the dangers, the catastrophes that may arise and that's why we, family members support our loved ones with his horrible condition.

You have my full support OP. You have nothing to blame yourself for, neither has your son. We all just get through it the best we can and with your support I am sure he will as you did and as I did too. It is very important to look after yourself and take breaks, as you did, and your DS will also learn from this how to cope better and build resilience for future, similar situations.

You aren't being negligent OP. Definitely get any help that's going. I would also strongly suggest Overeaters Anonymous. Your son has to take the decision to go but it does help (modelled on AA but for those addicted to food)

My experience with OA was it is a bit of a cult and not evidence based. It's very odd, weirder than AA and AA can be weird.

@autologo Could he afford any private therapy? (I can't earn but paid for mine with my PIP- it was worth it.)

@Lunabes just to add that there is also little or no NHS support for children with ED, especially bulimia or binge eating disorder.

Trashing the house in the way that he did is a choice.

Trashing the house in the way that he did is a choice.

He did tidy it up TBF.

@autologo Did he experience some trauma that originally triggered him to develop an ED? (He may not be open with you about this.)

I say this just because I found EMDR therapy had a lot of positive effects and it could have a knock on effect on his ED.

As PP's say, other therapists/therapies can vary in their impact. Even the NHS course of therapy from ED services wasn't particularly impressive to me, but I was having it as a 46-year-old. The younger someone gets treatment, the easier it is for them to recover.

I have no idea about this, just wanted to express my sympathy. Did he say why he had done this on this occasion? Can you otherwise leave the house knowing he’ll be ok? Do you ever get a break?

FWIW, I think you absolutely did the right thing going to see your family. You can’t be his carer (you should definitely claim carer’s allowance!) forever (can you?), you need time out.

@Seaside3

it sounds like op really really needed the break though and to see other family
she is human too and can only take so much

He did tidy it up TBF.

He tidied it up after his poor mother had had to return and find it that way: after it had upset her, which was presumably his aim.

A word from the other perspective if I may.
I am 22 and have AN B/P, and currently binge and purge 6-7 times a day having had an eating disorder since I was 12/13.
In short, no, no you were not 'negligent' in leaving your son alone; regardless of what motivates the actions of another adult, it's their responsibility, not yours. I try, where possible, to only eat 'normal' portions of the family food and binge food I buy myself. It wasn't fair he ate all your Christmas food. It is hideously expensive, certainly, and - whilst it is a disorder not a decision - ultimately it is MY disorder, not my family's, and therefore I feel I owe it to them to minimise its impact. When I do eat 'their' food, next time we go shopping I buy replacements (thanks to screwing up today I need to buy sausages and bacon to make pigs in blankets for my dad after I ate the ones leftover from Christmas day).
When I've had very out of control phases I have in the past ask my family to put food in locked combination safes and put chains secured with combination padlocks round the fridge and freezer.
Sadly in my experience help for any eating disorder beyond AN-R is hard to access and woefully inadequate when you do get it. I have done DBT therapy and some of the skills have been useful, though. Not sure why some posters are saying contact the crisis team as in my experience they are worse than useless with eating disorders.
I will say please, PLEASE ensure your son gets a blood test for kidney panel (electrolytes!) and FBC as soon as you can. I have almost died from potassium levels <2mmol/l on multiple occasions without ever knowing it's got that low, and it can kill you. Also, it may be worth seeing if your local ACEDS has a group for parents/carers, as many now do - ditto BEAT and Mind also used to run sessions for carers of people with mental health problems, not sure if they run them everywhere but it's worth looking into as the (many, many) failings of NHS mental health care puts an awful burden on loved ones of sufferers IME.

Pigglycat

He absolutely didn’t have a choice and upsetting her wouldn’t have been his aim.

ED sufferers can’t control what they do and want it to stop as much as their carers. They are full of disgust and shame. An ED is incredibly hard to beat particularly when you are getting no treatment and exhausted families are on their knees.

Nobody is to blame here. Mother or son. If you want to blame anybody you can blame the Tories for running mental health services down and not giving a shit, for mishandling Covid which caused an explosion in EDs and also massively underfunding ND diagnostics and support. The end result is the reality as above of living with EDs which many families are having to cope and struggle alone with.

Thank you for these honest and sometimes very painfully shared responses. My son had a better day yesterday and even patched up the cupboard door.

Some posters have mentioned the dire state of MH services, including services for EDs, in this country, and have also suggested sources of help. One thing that I would like to add, without digressing from the main point, is that when serious MH difficulties begin when we are young (e.g. still at school), which was the case for me, and for my son (he stopped attending school at 13 with 'GAD'), unless there is really solid and unified support, the young person may be on a trajectory that puts their whole life on hold.

My son, like many others, needs solid and consistent professional help to unpick the myriad of MH difficulties that he has (and perhaps support to consider formal assessment for neurodiversity), including help with his ED. Added to that, he needs a robust mentoring programme to help him engage in adult life outside his ED and obsessions.

This is going to sound really quite harsh and cynical but no matter how exhausting and difficult it may seem, the earlier the better. My life is fucked and I can’t function as an adult - it’s more than on hold, I don’t think I’ll ever be able to live normally at all, have relationships, eat normally. People do recover, though, and the earlier the better. Just any and all resources, although I’m sure you’ve tried as many as you can think of, will be helpful.

Can you pinpoint me where help for EDs is available? Who/where are these professionals? How do I access them?

I just know I won't find them on the NHS and I don't have the £££ for private treatment. Where can I go please? You seem to know a thing or two about it.

It is the eating disorder that is manipulative - not the person with the ED.

op, I am sorry to hear your difficult experience. My child was an inpatient at a similar age and this is where her ED came back. But where she stayed had not support for ED. We came in to feed her every day once a day (children are rarely able to be located close by). As you say there is next to no support. As a parent, you are really the main ‘professional’ involved! This has consequences on siblings also.

There's a fair few charities that offer help and support or over the phone services, make yourself unpopular with the GP, bang down doors until you are listened too. If it's really bad go to A&E or call 999.

These people won't ever think you're wasting their time. It is a sad state of affairs people have to call the emergency services to get help but that's the times we live in unfortunately.

There's a fair few charities that offer help and support or over the phone services, make yourself unpopular with the GP, bang down doors until you are listened too. If it's really bad go to A&E or call 999.

charities do provide advice but they cannot give home support or treat. Been to a&e and send home as 'not life threatening yet' only to be admitted to HDU 3 days later as it become life threatening. Hospitals only treat the immediate danger to life bits (as not enough spaces on specialised wards). Discharged after 2 weeks when physically stable and now back to square one. The next admission will only be a question of time. But real help? Even if going to a&e and admitted is not available. Why can't people understand that?!
'

I find it interesting that there have been quite a few people who suffer/have suffered from ED on here confirming that they behaved manipulatively as a result of their illness, but many others who don't suffer from the condition telling us that isn't true.

'This is going to sound really quite harsh and cynical but no matter how exhausting and difficult it may seem, the earlier the better. My life is fucked and I can’t function as an adult - it’s more than on hold, I don’t think I’ll ever be able to live normally at all, have relationships, eat normally. People do recover, though, and the earlier the better. Just any and all resources, although I’m sure you’ve tried as many as you can think of, will be helpful.'

@CeciledeVolangesdeNouveau I really can empathise with how you feel. However, 'recovery' means different things to different people. My 'recovery' has enabled me to reach a point where weight and food do not rule my life, and where I can focus on other things and find joy and fulfilment in these. Yet, it took a long, long time, and time itself can alter the trajectory of our lives.

If my son suddenly recovered from his ED he would have many other issues to deal with, including a cluster of unmet needs regarding his mental health, and the impact of incomplete education and lack of employment.