Thanks to all in advance,
Our 18yo daughter has wrestled with anorexia for a little more than a year now and is currently being treated within a residential facility, which we are very thankful for. It is, at least as best we can tell today, her and our best path forward.
She also suffers from a severe restrictive disorder and the house's no option for food choices has presented her with challenges that exceed, by a wide margin, her anorexia within that setting. She is struggling through it (with drugs it seems).
One of the things that we as parents have struggled with is the apparent removal from her treatment process over the past year. We only want what is best for her obviously but we are at a loss to explain and understand why her counselors at her previous treatment program and now her residential program appear to say that parents are a very important part of the treatment process and then *appear* to try to reduce parental understanding of what is happening most of the rest of the time. I understand that somethings are best to remain confidential, and I fully support that concept, but Im at a loss why (for example) the caregivers at her residential facility do not want to learn more about our daughters experiences to date from us. They indicate (to us) that they receive that information from our daughter, but surely they know that ED behavior includes lying through their teeth about whatever they can for the benefit of the disorder. They will only accept consent from a person who is clearly not able to provide it.
Its as bad as kids getting released from the same program that she is in without any go-home plan. Some parents are not told if the patient has eaten or not, what they are eating or even what the plan should be to carry on the treatment within the home setting.
Its very easy to point fingers and become paranoid about what appears to be the cutting off of communication between the patient and the parents, but we will never and are not doing that. I have total confidence that her program has her best interest in mind with all of their actions, but I just wish that someone would tell us.
Surely it is something like:
1) We have found that increased independence from family facilitates recovery, or
2) There are good and bad days and the reality is that you cant do anything to help the bad days, so we are trying to give you the rest that you need so that you're able to carry on when she comes home, or
3) She has requested that you not be part of her treatment, or
4) We find if too much communication goes home that we have to deal with back-seat driving parents and that takes away from the resources we need to treat your loved ones.
We do not care what the reason is - nor do we doubt whatever rationale its based upon - but does someone know why this happens? We have been on zoom calls with parents of other girls getting treated and this seems a universal approach - everyone seems to feel that they are being completely shut out of the process - some even pick up their girls from the facility without a plan for what to do the next day! It seems so inefficient at best but at worst brings high probability of taking steps backward once the girls are back at home.
There has to be a reason for this - I wish someone could just say it!
Your daughter is in one type of program. There are other programs out there that use FBT or Family-based Therapy. It sounds like that is what you want to try.
Thanks for the reply - this is indeed "family based therapy" which is why its so confusing to many. This is the third FBT program we have been in and they're all the same - poor communication between the program and the family. Its a poor set up. The programs require the heavy lifting to be done at home (and it is torturous as Im sure you are aware, unfortunately) but provide absolutely no feedback and leave the families guessing what to do. Its very strange.
Update: my daughter was discharged from the residence just one week into her 8week stay for being unable to meet the rules of the house. She also suffers from ARFID and is unable to eat 90% of the foods that were presented -supplementing was allowed but it still sent her into abrupt panic attacks that were severe enough that she ended up vomiting (which is against house rules for obvious reasons). Big set back as she was trying her very best to align and was discharged for the involuntary behavior of struggling with her ED.
We received the call that she was discharged and to come and pick her up 5 days ago. NOT A SINGLE FOLLOW UP CALL FROM HER PREVIOUS CARE PROVIDERS TO DEBRIEF AS TO WHY SHE WAS EJECTED OR TO ADVISE ON NEXT STEPS OR ANY GUIDANCE AT ALL. "Come pick her up" was the last we heard.
ED centers need to do better. She quit school and her job to attend this center who dumped her for struggling with the ED she was there asking for help to deal with, without so much as a single follow up to see how she is doing or to help in anyway with the plan. We deeply regret her stay at this location because it really has made things much worse.
Boy, I'm sorry you had such a lousy experience with this residential outfit. One can certainly start questioning where their commitments lie, that's for sure, when you know that they understand full-well that their actions have only made the person's situation worse, and haven't helped your attitude as a parent either.
It's hard to know what you should tell your daughter about this. One would hope there would have been some follow-up from the program to help you with this. For what it's worth, there are some treatment-provider review sites on the web that you might want to search out, and leave a review of your experience with them.
The fact that your daughter was willing to quit school and her job in order to get help is still something positive though, even if all she got was a poke in the eye from this place for her efforts.
If it were me, I'd advise you to keep trying to find a place for her, rather than allowing this experience to cause you to give up. One way you might get a better idea of what certain programs are like is to check out those websites where employees can leave feedback on what it's like to work at various companies. I've done that before for various ED treatment facilities, and the information I've found has often been…informative.
Did you try family-based at home with help from ED specialist, dietician, and family therapist? It is the Maudsley Approach and is done 100% at home--except for visits to your outpatient team (unless it's all virtual due to COVID). If your daughter wants to recover and is willing to try it. You become the residential. It's VERY hard but it works for some families. We tried it, and it was going well for weeks but my daughter started binging/purging at night and rejecting her meals...among other problems. We did learn a ton if we ever choose to reboot and go that route again. There is a ton of preparation that has to go into it before you even begin: setting up a contract with your child, a consequence/reward structure, finding an ED specialist who specializes in FBT, etc. etc. One of our big mistakes was not taking away all privileges, which could be earned back gradually by eating. We were not prepared and informed enough on it to be successful. I would approach it very differently and be much more prepared ....like you are training for the fight of your life...before launching into it.