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Member 37 posts
Posted 3 years ago
I am quite new to this forum, but not to caring as I gave up my job 5 years ago to look after my Mum who has dementia. I found there were lots or organisations who professed to offer support but in reality they didn't. I got given reams of paper and whole forests of leaflets, I even went on courses that were supposed to help but they were always PowerPoint script driven affairs that were not intended to be interrupted by questions. What did help was when I could get to talk to other carers in the coffee break. Then the real support and advice came through, it was pure gold. I had some talking therapy for about 6 months which helped me deal with my feelings of isolation, worthlessness and guilt which really helped.
And so far that is how it has been with my daughters ED, or Mofo as we call him ( she said Annie or Ed were to obvious). I asked if I could receive talking therapy again but have been told as we are under CAMHS it can't be done(?). I have tried to reach out to friends and family but most suggest I get tough on my D and tell her to stop messing about or in her fathers case, blame me. Its almost as bad as the "friend" who used to exclaim how lucky I was not to have to go to work and I could enjoy the good weather whenever the sun came out. So talking to them isn't an option. I do know, from having worked in NHS for many years, that being meek and mild does no good at all and you have to find your strongest voice to question everything even if you fear the answer.
Big thank you to everyone who has contributed to this site I have devoured every bit of it.
Admin 220 posts
Dear Say my name,
Its funny but I had a sea of shinny leaflets, spurious advice but no real support as my daughter battled her ED. I did apply for talking therapy, but by the time that they contacted me 4/5 months later I declined it as I was in a better space, but latterly I have regretted it as although my own daughter is doing well there can still be times when support for me would have helped. I am staggered though that there are terms and conditions for who can get the support, it might be worth checking it out; as in my own practice you are able to self refer to the talking therapies so maybe just check it out with your GP.
I too have had friends and family members who think that I have been too soft and a pushover and if only I had been tougher this would never have happened, I just don't take their views on board and I do try to gently explain and educate. The father too sounds guilty of offering blame here, I would suggest that he also has a responsibility of care to his daughter and to you and by resorting to blame he is trying to dodge that. In my absolutely personal opinion (i.e not necessarily the view of the charity). I consider that dads are vital to recovery as the daughters seem to need their approval, in my own case my daughter was desperate to obtain her fathers support and care while at the same time being very unpleasant to him, there really does seem to be no logic to the illness. Ignore your ignorant friend who really does not understand at all, I am sure if she did she would not make such a misplaced comment.
Finally I totally agree with you, at times I have felt as if I have had to fight to seek the care that my daughter needed, I had to complain frequently and put 2 official complaints in via PALS which were acted on. The system is so creaky a person with an eating disorder is trying to disappear and the leaky system can facilitate that so never be shy about raising concerns and always ask questions.
Thank you for your post and for your encouragement for this platform
Posted 2 years ago
I have since been advised by the CAMHS nurse that being refused Talking Therapy is ridiculous as it is for me whereas their services are focused on my D. She has often told parents and carers to contact TT to help them deal with the issues faced by those supporting someone with ED. She has contacted them to relay this and hopefully I will be offered it again.
Thank you for your support, it really helps.
Posted 4 years ago
I have sought counselling for myself as I have had to take time off of work for stress. Partly the stress was due to my employer who told me that I now had to go full time or loose my job. I have not signed any contract at all so I don’t really have any job security. This makes my caring role very difficult. I have to prepare the evening meal in the morning, before I leave for work at 7.30. My daughter puts the supper in the oven when she gets home from college ready for my return. Counselling has helped me to manage my mood a bit as I am usually a bit tierd and often grumpy when I get home, its just good to be able to share my feelings, I can offload and try to get an objective perspectives has anyone else done this and found it useful
Member 3 posts
I have tried so many different things. I phoned people - payed many people for a one hour conversation which I thought might give me an insight that I desperately yearned for. I tried psychotherapy - it was a very strange and uncomfortable experience which left me feeling very vulnerable and isolated. Counselling was unhelpful to me because I found telling someone what I had gone through was traumatising - reliving the nightmare just added to my stress. Unfortunately the counsellor I saw had no understanding of eating disorders. After the 3rd session the counsellor started quoting suggestions from a book that she had obviously read that week and I decided it was not going to be helpful to carry on. Family therapy has also been a very mixed bag for our family. The family therapists we saw did not specialise in eating disorders and often I felt that our family was under the spotlight in a negative way rather than the eating disorder. Instead of finding our strengths as a family, the family therapists I saw focussed too much on discussing the areas of difficulty so we left feeling that our family unit (which had been very different before the eating disorder began to take root) was in pieces but we had no strategies to start putting it back together. It is my opinion that families need to feel empowered and be taught survival skills - education and good support are key. My advice from my experiences is that finding someone who knows eating disorders and what they do to families is very important. I don't think anyone can understand the behaviours if they haven't experienced them as a sufferer or carer or worked with sufferers and carers professionally. My daughter has been suffering for 3 years now and it has taken me this long to start believing that I am not to blame - even as I write this a part of me doesn't believe that is true. I could have done a million things differently ..... I wonder if anyone else feels this way? I feel strongly that parents cannot begin to help their child if they feel that they are to blame in any way because this is not empowering. The support I wish I had found would have helped me to feel empowered in the face of my daughter's strong emotions. So many people (friends, professionals and family) have constantly told me I need more support until I started to ask what 'support' even is. Does anyone know what I mean when I ask this? It started to irritate me a lot in the end because no-one could actually tell me what 'support' I needed, where to look for it or how to ask for it. Please share here if you have good experiences of being supported - it could make a difference to others if we share our deas.
Your post rings so true on so many fronts. But the first thing that I want to say is that your daughter's illness is not your fault, it's not my fault, Its not any person's fault but I do think that it is societies' fault that it is so misunderstood, uncompassionately swept aside and still such a mystery. I do still look to blame myself and I do if I feel that I have been weak and given in but the some times I haven't had an option, if I didn't want her to be uncontrollable. When my daughter was first diagnosed I was desperate to find any information or help and I was pretty unsuccessful, while hoping all the time that the illness would just go away, that she would go back to eating as she used to. We are 6 years into the illness now, there have been some good times when you can almost forget it and other times when you cant think of anything else. Through it all it has been me the mother the constant on 24 hour alert. I must say that although my daughter is still ill things and behaviours are not as extreme or as frightening as in the beginning. But I suppose that I have just put my life on hold, so that I can be there, that makes me sound like a saint I haven't been and my thoughts have been far from saintly but ultimately it comes down to me being there. I think that counselling varies and you are so right if the counsellor does not understand Eating disorders in a way if they have not lived with one then they wont get it. I was given a big shinny folder....... then the care support worker went off sick. When my daughter was in a very good unit there was some helpful family therapy that I suppose smoothed the surface a bit as my other 2 children have not found this easy.
I completely agree it is the whole family who suffer and there is no intervention really that I have had that has helped that in truth the out patient care for my daughter was so poor that there wasn't really support for her let alone support for her family. I asked for family therapy for her and her sister about 3 years ago it never happened. At the route of all of this failure in my mind is the foolish assumption that those suffering with an eating disorder will comply, if and when they do want to recover working against the dictates of their eating disorder seems tough.
You ask what support there is; I think you then provide the answer, we are the ones who are living it. It has been other parents of suffers who have just listened to me they have been a support, hopefully this forum will give the platform for us to support each other. I hope that things go well for you, your daughter and your family.
Thank you for your reply. It is really hard to know that this illness can go on for so long but I have now started to wonder if recovery is ever permanent. I wished for it so much to begin with and was dismayed when I heard stories of long term illness but I have now started to think that my daughter will always have this illness within her to some extent. My daughter has refused to speak to anyone about her illness. She has been in hospital twice and refused both times to engage with any psychologists or psychiatrists. The psychiatrist at the end of her last admission described her as 'stubborn'. I was too emotional at the time to question her on this description but it really bugs me now. I was trying to argue that she shouldn't be discharged as she was still very ill and the psychiatrist said that because Emily refused to speak to anyone about her illness, there was very little they could offer. The fact that she ate every meal and was getting healthier seemed secondary to them. My priority was for her weight to be restored and I hadn't managed that at home so was very concerned that she would relapse immediately. For a psychiatrist specialising in an eating disorder unit to describe a child with anorexia as 'stubborn' is similar to the kind of thoughtless comments like 'it's just a phase she'll grow out of' made by people who really don't understand that there is nothing left of the child you once knew, they have been taken over completely by a demon who is determined to end their life. My daughter is not stubborn, the illness that has taken control of her brain is very stubborn. I think the most important thing that any parent can try to understand (and the professionals it goes without saying should be getting this right) is that a child with an eating disorder has disappeared. The behaviour you see is the eating disorder NOT the child. With this understanding you can direct your anger, frustration, sadness appropriately at the illness which will hopefully help you to stay calm when faced with the most unbelievable of behaviours. I had to learn this for myself over time, through reading and experience but I think it should be one of the first things explained to parents so that they can be prepared for what might happen or to help them understand what they have already been experiencing. I feel angry about so many things people (professionals included) have said to me over the last few years. Of course I am most angry about what this illness has stolen from us and I am trying to acknowledge and let go of it. I thought the key to my daughter's recovery would be therapy. Three years on, she still refuses to talk to anyone. She won't attend any Camhs appointments or even see the paediatrician. I have been completely on my own - attending the appointments without her, trying to support her and no-one can tell me what else I might try. The psychiatrist told me that she had never met anyone as stubborn as my daughter in all her years at the unit. What a great way to ease my concern as she was filling out the discharge papers and also telling me that they would probably refuse to re-admit her due to her refusal to engage in psychological therapy. I sat there, one parent, in a sea of 8 professionals or more ... and I lost my cool - I said that I thought it was criminal that my daughter could not have a place in hospital when an illness over which she had no control was trying to kill her. My message went unheard and I was just another over emotional parent ranting against the system. There is so much to say about everything. Is it helpful to reflect back on these things I wonder or does it just stir up bad feelings? I'm not sure.
Oh goodness, I recognise so much of what you say, even to the extent of the stubbornness of your child if it is any consolation at all my daughter was/ is/ can be just the same. And it is scandalous that you have been treated as you have; where is the support for you and your daughter? reading your post I got so cross at what you have been going through. EDA do have a help line for carers as well it may help you to phone them as well (Monday to Friday 9 - 5 I think), as sometimes talking things through helps to organise your thoughts. Also keep talking on here. I would also pass on 2 bits of advice, my sister is in quality in the nhs and she has advised me that is ever I am unhappy with what I am being told then you must ask "are you refusing to treat me under the NHS" because they cannot answer yes to that. Also complain to PALS they really do take it seriously well they have for me.
I am not sure that any of this will change the situation but at least it gives you some recognition. I am currently waiting to see what the NHS can do for my daughter who has been told that she weighs too much, last time they told her that she starved herself and made an attempt on her life.
Opinions are divided on whether the illness can go away completely, I know some who have completely recovered and others who are still battling after many years. I cannot see that my girl will ever be the same happy go lucky girl that she once was, and I am very angry that it has stolen her carefree years 19 - 25 the time of freedom, but in another way she has had to face herself and know herself which does give her a tremendous insight. But from what I see the illness does change, she did begin to talk a bit more, the thing that turned her around was a good unit that she was in for 11 months that was 4 years ago. She needed to see that anorexia could not deliver the things that it seemed to promise, she is still trying to wholly believe that. Please don't give up hope though, because you still believe in your daughter you will see her through. You are right the stubbornness and horrible rude behaviour is the illness - cannot believe that the "professionals" do not get it still gobsmacked that they expect someone with an eating disorder to comply its against everything that the illness is telling them to do. Through it all I had to witness and accept behaviours and comments that I never imagined I would have to deal with, even though my chin may have been on the floor I tried to be clear that I did not expect that from her, that I understood that it wasn't her but it was the illness that I was staying by her and sought the chances to support her and show her that I still loved her, easy words I know. But please, please just keep going, you will make the difference just make sure that you look after yourself.
Thanks again for your reply, it's good to know that someone else understands my perspective. I will try calling the helpline as you suggest. If only all parents helping their children battle this illness could be offered specialist counselling. There is so much information to take in and lots of places to go for it but equally it's a bit of a minefield trying to pick through it all when you and your child are in crisis. It's great to have a website like this to turn to and a forum to voice opinions and share experiences. Hopefully the care provision in the NHS will improve over time. In the meantime, I hope you manage to find the help you need for your daughter, it seems very unfair that you have to battle so hard to get help and your daughter continues to be at risk.
I am just looking over the posts and I wonder how you and your daughter are getting on?