F.E.A.S.T's Around The Dinner Table forum

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Linda2
My daughter is 20 and about 2,5 years past WR now (after 5-6 years of AN, Bulimia and AN b/p. Many admissions and very difficult times including s. attempts / s.h. etc. 

I am doing a lot of reflecting. Part of my 'working through this all' is sharing some of the things that helped us. This same help has come to us in many different ways and small bits that we had to 'piece together' to suit our situation. Our girl.

One piece of help came to us from a dad who we ran into in the hospital grounds when we were frantically searching for our dangerously underweight girl who had run off because hospital staff had made yet another mistake, causing the fourth failed hospital admission in a row (the complaint we lodged with H&D has produced a better protocol for hospital staff in the treatment of AN patients apparently, but we have never gone back. We were on our own driving our severely dehydrated undernourished girl home while she had an epileptic fit in the back of the car. No support, because she was 18 and refused to go to 'adult' services. Health professionals told us they were not allowed to give us any medical information without her permission and she would not let us go with her because her brain told her she was an adult now (that was what she was told by professionals after all) so if she didn't want to go to a doctor, 'she didn't have to'.

Back to the dad in the hospital grounds. There he was, with his 22 year old WR girl giving us hope and compassion. I embraced the girl and his advice: 'Keep her close'. Even if she is an adult now, she is not really an adult yet (as you probably all know). 
Actually Because she is an adult now she is more vulnerable because she can (and will) refuse to go to the doctor. "It would be really good if you can have a blood test this week, when you are ready", we tried instead . Lots of (silent) compassion and self compassion. No Anger, no Guilt.

Work together as a team and go slowly. Slowly introduce changes. A change to a different type of muesli bar took two months. Just in the same way as my colleague helped her autistic son to make a change in his diet: through a series of tiny little steps. Something else might work for you. This worked for us. The change to another bedroom took over half a year. A change to a different 'thing' she could get stuck into (music) took -I don't know- well over a year. We were already working on that one years before WR (the last WR that is- now no relapses anymore). We used to bring stuff to her in hospital ,i.e. her dog, paints, and a guitar. I'm not saying that you have to do that. I'm saying sometimes follow your gut feeling, sometimes follow your heart, try out different things and see what works but DON't GIVE UP. Just keep trying and stay calm while you are trying if you can. If you can't, then no matter, next time you can.

Society tells us that 'now they are an adult, the child should be able to do it on their own. Our friends and colleagues at work with adolescent children bombard us with their 'success stories' of how independent their children are becoming and how they (the parents) are 'just being tough'.
Well... when that happens I know how that feels (a mixture of being a failure, ashamed, tired, hopeless and depressed ._.  Hmmm... It is really tough.

Unfortunately we are not in a position where we can apply 'normal parenting'.
One person (I think it was one of the psychiatrists we met) said: "you will have to do 'abnormal' parenting. You would LIKE to be able to do 'normal parenting' but these are not normal circumstances so do whatever you think is the best thing at that moment in time. And change ... and change... and change.
and adapt.

But stay-with-it. Even if she goes away for a while. Be there. Call in, require blood tests/ doctors visits, be available (but not In-Her-Face). You want to give the impression of independence and promote self-esteem, self-efficacy, responsibility within what is possible and safe at that time. The number of times that I rushed off to the pharmacy to get her a medication  in the middle of the night, because that was when she was ready for it. To respond to her need at that time is really important I think, because it is really hard for them to tell us their need. The ED doesn't let them. So in the beginning it is only a very small window of opportunity to help each time and if you miss it it is not the end of the world, but 'be there' so you can catch the next opportunity.

Lots and lots of love and good luck for everyone.
I am sorry I can't be on the forum very often because I have a full time job and study, so I thought I'd just put up a separate thread so I can just call in every now and then.

Much love,

Linda.


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NELLY_UK
That is really helpful Linda. Thank you for sharing and taking the time.
Hubby and I were talking about how to be compassionate when you discover your bulimic d has stolen your dinner.
It's very hard.
When faced with lies upon lies.
Not sure how to do compassion any more.
NELLY D 20 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. ED/Bulimia treatmentis in the dark ages in West Sussex.
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Linda2
Dear Nelly, thank you for your reply.

I hear it is awfully hard for you guys right now and I am sorry if I have made this all sound too easy. 
I know how hard it is to go out shopping knowing it will end up in the toilet. It is understandable this makes you angry or sad. It is sometimes hard to tell yourself that this is ED doing this, not your daughter.
Somewhere underneath it all is your daughter, feeling oh so small, worthless and undeserving. It is her who needs compassion and you can give it to her silently, by thinking it. But before you can do this you need to give yourself some self-compassion first. Sorry to sound totally 'new-age ' here. I just think this is the most terrible illness and what I am asking you to do just now goes against all your sense of what is 'normal'.

Things will change Nelly. It will not stay like this forever. I have a firm belief that things WILL get better for you and your daughter. You are still here, for her, every day. Even if it doesn't feel like you are getting anywhere at the moment, you are filling up her emotional 'tank' every day, until it sticks for long enough that it can help her consider resisting the ED.

Thinking of you, 

xo
Linda
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BJUK
Thanks Linda, this is just what I need to read right now. Four years in to this and we are all emotionally exhausted with wondering how to be with my very resistant D. I know when I try to be compassionate towards her (it's hard because she can be so rude and mean) whatever I say seems to inflame her. I haven't tried 'silent compassion'. In the past when I say nothing, she thinks I am ignoring her and it gets her so angry, so it compels me to say something and it is inevitably the wrong thing!
Could you elaborate a bit more on the silent compassion please? It sounds so much worth a try and might bring a bit more peace to our house.
Thanks x
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NELLY_UK
I know it seems that I buy food to watch it go down the toilet by actually when she steals my food before I have eaten and I have to cook something new or just have toast. I find that impossible. I only have to turn my back for a second and she steals food from my plate.
Then screams at me.
How would you tackle that?
I am struggling.
NELLY D 20 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. ED/Bulimia treatmentis in the dark ages in West Sussex.
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Doitagain
Linda - I love your post - thank you so much for this. It gives us all hope. Especially when you say your D is 2.5 years WR.

I agree with keep them close - but not in their face , and promoting the idea of independence and self esteem but in SMALL ways on a regular basis (I think that when your are saying?). We are trying to do this now with our D. Our children are somewhat emotionally stunted - the good news I think is that they can catch up. So we might well be dealing with different issues at different ages to what is the "norm" for other non ED "young adult children ". To others it might look odd that my D is doing X at 18 when their child did it at 15 . But that is the nature of "catch up" isn't it? It might also be odd to others that our young adults CANT do something their peers are all doing but that is the nature of catch up too. They can't do this because they are NOT that age emotionally - they will do it but it takes time. And this is where THEIR shame and guilt comes in. They KNOW that they struggle in a FEW areas and they are ashamed. They sometimes WANT to do something "normal " but can't . This is also what makes them ashamed . This is what is taking time with my D - I can see that now. But slowly slowly she is moving forward on this.

When they make their appointment for bloods etc , or whatever situation you choose to insert here , there is a HUGE opportunity for self-esteem building .... Oh thanks for making those two appointments this week - you're very organised right now aren't you! (Lighthearted).. Or ... Thanks so much for making those appointments this week - I'm up to my eyes with X and it really helped (ignore fact that at this age a lot of kids would be making their own appointments anyway and you are thinking will I be doing this all my life etc etc!!)

No anger , no guilt - couldn't agree more. (This is quite counter intuitive for an angry parent who may be in the thick of it... It's a hard one).

For me the most wonderful thing in your post is this... "To respond to her need at that time is important because the ED won't let them tell us their need". Yes, yes and yes. To re-open communication is a wonderful thing and if we can grab each small opportunity to do this as they present themselves it they may get used to this and start to open up more)

You've written this so well and in a way it ties in very well with the separate conversation on going on in The Options thread .

And by the way I don't think it is New Age at all! It is quite New Maudesleyxxx
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Linda2
Dear Nelly, 
I would like to acknowledge you first. you are dealing with such a hard situation right now.
Yes I am very well aware of what you are dealing with right now and how hard that is. Our daughter was very seriously ill for around 5 or 6 years and we went through many different stages and levels of not coping, not responding the best, loosing it ourselves etc etc. It is not helpful for me and my daughter to talk about these things in too much detail and I can only say of all the mistakes I made "This is how anyone would have responded, really, just about."  Amongst everything that didn't work... I'm trying to think what was slightly more successful:
- I think having your meal at a different time and keeping some things in a safe place.
-You know, about bulimia: I was always really confused with the difference with AN b/p, because what looks like bulimia can be easily that: AN b/p. What happens is, because of the ongoing restriction, they get this immense hunger; can't control this anymore and then steal food. It causes a lot of shame, self-harm etc.
-We had a plan in place (which was discussed with our daughter) that we would ring the police if there was any concern.
- If you can, go for short (5 or 10 minutes) time out/ walks  with your husband. It gives you a mental break and time to discuss your next strategy because team work is KEY.
In the beginning we could only manage a walk in our garden, because of the threat of self harm. 
- Remind yourself each time though: your daughter is NOT doing this to harm you. Right know her thinking is not right and the only thing that can make that better is food/ weight gain.
- A combination of PRE- and Pro-biotics can help her thinking, because it re-balances the gut bacteria that have been destroyed by the vomiting (we didn't use to know about that).
- Hugs OOO

Bjuk,
I learned self-compassion from Eva Musby, who has been an amazing support to me. For over two years during our really hard times she  emailed me and supported me. She taught me how to stay calm, give myself some self-compassion first and think first before responding to my daughter.  I can't thank Eva enough. Eva also does something called 'non-violent communication' which is communicating with empathy, focusing on feelings and needs. see her website evamusby.co.uk Have a look at the last two chapters.
Nelly please find the time to read it too (I know that sounds impossible for you right now)
Also DBT skills were very helpful.


Doitagain,

I love your post on the Options thread. Sorry I don't have the time right now to join a discussion thread because I am at the verge of finishing my study (doing the discussion part of my thesis right now : )
Well, not quite right now.... I should be!

Yes, (I'm reading your post again) that is exactly what we did too. I was cheering you on when I read it (that self-esteem building part) YEAH!
If it doesn't work at that particular time, please know that it does go into the piggy bank.
You can tell sometimes when she your daughter looks at you out of the corner of her eye. It is almost as if your daughter is looking at you from behind the eating disorder  (always used to give me a little chill because it shows you how strong it is. 
Just feel proud of her. She is fighting.
Sometimes for her it is the smart thing to do, letting you know she loves you in very subtle ways, to avoid the repercussions of the ED.


Lots of love

Linda


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Linda2
Hi,
I aware that many caregivers are really struggling at the moment. Thinking of you all and wishing you all the best.

This post relates to a different stage (WR, nearly 21 year old, living at home).

Just wanting to post this because I want to remember the lesson I learned last week.

My daughter is still in a lot of pain (had a wisdom tooth removed), so she wanted more pain medication, which I refused to go an buy because it already had been 5 days and the packet said don't use for more than 3 days. She then said she would just get drunk and not eat (which she did).

After 48 hours without medication we checked with the chemist and negotiated that she could have another few days more and no drinking alcohol.
After that she started to eat again.

My learning:
- To managing my own emotions/ remaining calm (tick)
- Dealing with getting blamed for the (length of time of the) illness and my daughter's emotional dis-regulation.
  That was harder.
  1:  I realised that alcohol amplifies emotions That didn't help me much though.
  2:  I googled 'blame' (how to respond to it, because it upset me a lot) and learned blame is about Love or Fear.
       so in spite of my own emotions I just said to her 'I hear what you are saying; I DO love you'  (just calmly/ matter of
       fact).  She said: I HATE you and it is your fault I am not eating and I said again: I DO love you.
       She went away. Later on she ate.
- 3:  My own emotions. Telling myself it is not my fault. (Doesn't make me feel better; still feeling sad about all of the
        illness) Oh yes, that reminds me:  
        Gratitude (I nearly lost her a few times to ed etc.). But than again: I could have lost her at child birth and when she  
        was 5 months old: she choked on a little cardboard square chewed off a board-book and I saved her life (lucky I went
        to a CPR course). Keep going, she is doing well.

My emotional dis-regulation has a lot to do with fear. Right, this is what I wanted to remember:
Kathy Byron (The Works): you can google her if you haven't heard about this. She goes through some fundamental questions, two of which I need to keep in mind. Kathy's questions: "Is it true?"  and ("How can you be sure that it is true?)"
        Answer: "No of course it is not true" (I haven't caused her illness). About the Fear: Ask yourself: "Is it true?"  (Whatever the fear is about) "Am I sure this is going to happen?"  "Am I sure I won't be able to cope if it happens again?" The answer is 'No' because right now it is not happening.
Right in this moment am coping : ) 

- 4: New years resolution 
To try and avoid my daughter feeling judged by me, so when she comes with an idea (plan to find a job next year, on 3 specific days of the week between 2 and 6 pm) I need to avoid  thinking.... (uh ...)
I will think instead: "This is a new beginning".
I have tried out many new things in my life, some good, some not so successful. My daughter will also try out many things. It is not my job to make sure she is not going to fail. I want to respect her choices and see each choice as a new beginning, a possibility for her to explore and be curious about.


Linda


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Seabird
Hi Linda2 and Doitagain

I am in midst of preparing to go on holiday (wow!!) and finishing up work so can't write a lot here just now - but I wanted to say it's great to hear of other parents taking a similar approach to our "adult/not adult" 18+ kids.   

It is a scary journey being in that support role after being hands-on SuperMum, but it is very empowering seeing it working well.  The small steps and being there when my S asks for help or wants to share his thoughts.   Not being "in his face" as you say and allowing him the sense of independence so that he can grow and take his own steps in his own time.  

Still providing a lot of actual help but not blaming him for him needing help or advice, or being where he is at.  And telling him I love him for who he is. 

And seeing his confidence grow as he takes these small steps.  

Things could be better - we could be having a shared family Christmas - we are not - but we had a pre-Christmas shared lunch including my partner, and my S visited our home and that all went fine.   So my partner and I are taking the opportunity to have a break away, which is the only time we've been able to do this.

I have come to see that it is enormously important to my S's continued recovery that I continue to provide this support and encouragement and allow him his own space to make his own decisions.  

Best wishes 
Seabird 

Mother of 20 y.o. male diagnosed at age 16 with RAN, exercise compulsion, anxiety, depression & SH, FBT 4-5 mths to WR, WR now 3 yrs; suicide attempt 4-6 wks after WR,  IP 4 weeks.  Steady progressive recovery over past 3 years including support from psychologist on general wellbeing. Slow steady steps to success!! 

When your last bow is broken and your last arrow spent, then shoot, shoot with your whole heart
 [Zen saying}
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Linda2
Dear Seabird,

Thank you for sharing your knowledge on this forum. I remember you from way back. My user name was Leah back then, but had to take down the whole thread because my d was very sensitive about me posting. I am still not able to say much on the forum so please let me low if you would like to email or Skype. 

So good to hear your son is still doing well and you are having a well deserved holiday.

I feel a bit sorry people are not able to re-read my posts. I re-read yours from March, which I really connect to. It talks about engaging in LIFE : )

I feel this is how we helped our d. and still continue to do.

For us it is about promoting LIFE / her specific  LIFE interest alongside our ongoing support with meals (letting her be in charge; letting her take the lead). 

It also involves me being involved in LIFE, taking responsibility for my own health and well-being. 

Best wishes,

Linda
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