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

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daddyg
I can't take it anymore, my wife and I have been as patient as saints working everything we possibly can to help our D. fight anorexia, probably to a fault, but we can not continue to destroy our lives and that of our younger son and older daughter.

My D cries for at least 2 hours at home everyday since being released from IOP 6 weeks ago. We have been in treatment for 20 months, without my wife working and all the co-pays and deductibles, we are on the verge of bankruptcy and getting no where.

It is so annoying, every single improvement where we feel we make some progress is taken away as soon as ED realizes it helps, it is stopped.  Lately my daughter won't even take her medicine; she has had some good success with Clonazepam for stressful times, and Olanzapine on a regular basis. She also take Hyoscayamine Sulfate for IBS, and Culturelle.  But now she won't take anything, she knows it helps but it's like she wants ED to win. 

I can't afford more residential treatment or IOP-PHP she just goes and is compliant and maintains the facade of a perfect looking recovered patient.

Now what, my wife and I are thinking we could find a place for her to live so my 12 year old son can have a normal life, with one of us and we can alternate living with her somewhere else so at least we get half our life back.

But her loud crying everyday would get us kicked out of an apartment or hotel.  She does wonderful at school and around everybody else but when she is home around us she hates her life and us when ED is in her head.  She or I mean ED wants us to hate her, and we don't let ED get that, we LOVE her and we'll try anything but more treatment at the same places.  She has a great therapist, an okay pediatrician, and we just started with a good family therapist.
D diagnosed with AN January 2015, attended PHP, IOP, Residential 18 weeks, back to PHP, IOP 26 weeks, at home struggling, with 1 doc 1 therapy visit per week, til Christmas 2016, back in residential treatment now.
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sahmmy
Hi daddyg, You and your wife and son ARE saints! You are doing hero's work. I am so sad to hear that your d cries every day. I'm sure that's horrible in the house every day. I feel your pain on the financial front - we've also just spent a huge chunk of change on this illness, and we're needing to rethink how to continue going forward with the best we can do.

Step back and look at what assets you DO have.
1. You say your wife is not working - that's a GOOD thing. She is dedicated to taking care of the family, and that's EXACTLY what you all need right now. 24x7 round the clock care is so much more effective and cost efficient when it's given by a parent who has a vested interest in the best care for your d. The countries with socialist healthcare have figured that out thus they use the most cost efficient and effective resources available = parents.
2. You have an intact family, mom, dad. Share the love. Everybody helps cook, do dishes, and distract and entertain d.
3. She has a therapist - count your blessings.
4. She has a brother = peer support for her. Someone to play Scrabble, cards and video games with, watch a movie with, someone 'on her side' who isn't going to make her eat. (that's mom & dad's job)

As far as not taking the meds, life stops until she eats AND takes her meds. If she doesn't take her meds, she doesn't go to school, or go anywhere, or have any kind of a life.

<<< Now what, my wife and I are thinking we could find a place for her to live so my 12 year old son can have a normal life, with one of us and we can alternate living with her somewhere else so at least we get half our life back.
This sounds to me like ED is dividing the household, and I'm afraid it will divide the marriage and the parental involvement with the 12-year-old. This isn't good for anybody. If you're at the end of your financial rope, you certainly can't afford to pay for another place of living. No, you don't want only half of your life back, you want ALL of it back, with your wife AND both kids.

It might be better for you and your wife to take turns leaving the house for some peace and quiet for some short spells, like a few hours. Can a relative or neighbor come over to sit with her while you and wife go out? She can control herself long enough to be good while in treatment, maybe she would also behave so as not to embarrass herself when grandma or the little-old-lady-next-door comes over to stay at the house?

Love*Power*Fullness

d=18, R-AN, Generalized Anxiety Disorder. Refed at home with information gathered from this forum and lots of books. Relapsed. Refed. Relapsed. Refed. 17 sessions with an excellent individual therapist. 19 sessions with unhelpful dietician. 3 sessions of DBT (didn't like it). Psychiatrist available if needed. Prozac - fail. Lexapro - fail. 5HTP - fail. Clorazepam/Klonopin = major improvement, only used when necessary. Genomind SLC6A4 short/short - not able to process SSRI's.
d=15, lost 14 lbs in 8 months, Ped [nono]diagnosed as a crystal on a hair in the ear canal
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Torie
Oh dang, this vile illness takes such a terrible toll on all involved. ED is the worst. The absolute worst.

It sounds like you and your wife have been doing a great job for your precious d. Sucks so much that it takes. so. frigging. long. and exacts such a price along the way. 

BUT HANG IN THERE!!!!!!

daddyg wrote:
I can't afford more residential treatment or IOP-PHP


Well, then ... all the more reason to keep on keeping on, doing your best to make sure she's moving in the right direction.

Please remember that IT DOES GET BETTER. It really does. It's worth it.

Keep up the good work. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Sotired
How would you make that work realistically?im not sure dividing the family up will achieve what you want it to, seems more likely it would end in up in blame and recriminations.
Twenty months of her getting the majority of your care and attention is a good bash at this.for us that's when we said that we had to draw a line under what could and couldn't be done for d.our other kids matter too- not as people who could help us with our an daughter, but as people with needs and rights of their own.they have the right to live in a safe space and to get our time and attention,though because my other kids have a type of special need also, this was always part of the deal in our house.
Two hours a day crying is too much to ask of anyone to handle-I put myself on antidepressants so I wasn't crying every day and I think it could only be beneficial for your d to be on them.that crying wears out the crier too, so then you are even less able to cope because you are exhausted.can you make it a condition of your d living at home?yes our an kids are in pain but their siblings pain, our pain, matters too.i think we often forget that.
Acknowledge each and everyone's pain in your family-maybe you could have a family meeting about it, or talk to each person privately about what they need to function.maybe it could happen in a therapeutic setting with the therapist.its not about casting blame but a way for everyone to have a chance to talk about how this feels.in all honesty, we told our d she had to go on meds.we didn't say it was optional.then one of us checked every night and morning to make sure she took them.because getting them to agree to meds is only half the battle, getting to make sure they are actually taken and not palmed and then thrown away is the other half.
It helped a bit.im sorry that residential is not an option because it might break the habit of crying.i do believe that crying can become a habit as much as anything else.sometimes I would actually insist on d doing jobs around the house-folding washing, emptying the dishwasher while she was crying.my reasoning was that if she was going to be miserable anyway it might as well be productive misery.(I can be a bit of a hard ass about things due to my own upbringing).often with something to do and no one interested in the constant sobbing, I would find it would stop.
If nothing I have said is useful, then all I have is that I hear what you are saying and yes, this sucks.
Sotired42
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melstevUK
daddyg,

An eating disorder in the house is enough to make everyone run away but I think you know that this is not the answer and will not work.

You say your d is doing fine at school.  I tend to go along with Sotired here - the crying and suffering is a habit and it needs to be stopped.

Rather than focusing on the ed as the sole problem (which it is to a large extent), your d has to start learning that growing up involves learning adult behaviours and coping mechanisms, that she needs to learn to live her life as well and as usefully as possible.  Sobbing for two hours is not natural - so tell her this and that she has to take her meds to stop this endless suffering.  
Also, she needs to find some things that bring her enjoyment, e.g. reading, going to the cinema, going for a walk, playing a game with her brother.

Tell her calmly that this behaviour has to stop and tell her to sit down with you or your wife and find one enjoyable activity to do for the coming week every day.  The days will not get better at home unless she does something nice at home.
I don't know how old your d is so it is harder to suggest anything else without knowing this.  Also, if she is managing at school, does she have homework?  Does she see friends? The reasons for the sobbing and misery are almost irrelevant at this stage.  She has to be told that she has to learn to choose not to suffer and she has to do what is necessary to make things better for herself and for everyone because this has gone on long enough.
Let us know how things go.
Believe you can and you're halfway there.
Theodore Roosevelt.
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mojo
I have no great words of wisdom or practical advice. But I can say as one warrior dad to another, your daughter and your family are worth saving if only because somebody is going to need to hear or read your success story someday. Don't back down.
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HateEDwithApassion
I'm sorry I don't have a magic bullet idea, but I wanted to know you are being heard and that we emphathize with everything you are feeling and saying. I believe this disease is so much worse than others like cancer because our kids don't "seem" to want to get better so you do all the fighting for them... and that's exhausting. 

You mention the expense and that also puts a lot of stress on a family and creates resentments for everything when you don't see any good coming from it. I get it. The only thing I can say is that reading on this forum, you know that many families bring their kids back from the brink even when it seemed hopeless. Sounds like family therapy would be good for all of you - and getting those meds in her too using whatever leverage you still have.

My prayers will go out to your family and your other kids especially. Her siblings will be ok - they are surrounded by loving parents who are trying to save their daughter, and that, while frustrating at times, it also an example to them of true sacrificial love that they will remember and respect you for. 
19 yo D. AN - since about 15 years old. WR quickly - but the last four years have been tough. Since Sept. 2017, two residential stays, now in IOP, fighting a relapse. ED is hanging on, mental state not great, can't get her to remain at a weight long enough or high enough to see mental healing. She's on a gap year that will likely now turn into two.
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Sotired
Ihedwap,
Honestly, I disagree that the other kids will 'be ok' and understand about sacrificial love.i wish people worked that way, but they don't.and there can be sad repercussions to focussing exclusively on one child at the expense of the others.i fully believe that everyone's life in the family matters and time must be spent with the other children-not just the sick child.
Particularly where mental illness is involved, because it goes on for years and there is no remission from it -often other comorbids simply take the eds place.
Don't get me wrong-I think it's very important to support the ed child still-but it cannot run the family forever.birthday parties, outings, sports events,-those provide normality amongst the chaos.the other children in this situation need acknowledgement and time-or long lasting resentment and hate can result.my own d struggled mightily with this, that I still put time and effort into the other children but it has meant that we still run our family like a family, they feel less resentment, they still enjoy spending time with her.
Being two years in is very different from the first year-you can't just keep putting other family members in stasis and hoping it will all work out.life has to continue on, with everyone's needs acknowledged and met as best they can be.i have done little things with middle d-going out for a quiet breakfast,getting our nails done, going out for coffee.smallboy has ASD so he has appointments and therapy,we go to minecraft club,we do play dates,just for a couple of hours.sometimes ed d has tried throwing tantrums or making it about her but for that period of time we put our other kids first.
Showing healthy ways of being matters too.
Sotired42
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mumto3

I like sahmmy's advice about having a neighbor come over during these "spells."  

I am a teacher of young children and sometime you just to tell them it is time to stop crying.  

This weekend something happened with my daughter that reminded me of how much they are tortured by their brains...  She had a competition and was waiting for results - during this time she decided that she was going to get last place so she refused to go to results even though her friends were there.  Well, she didn't get last place and afterwards she said to me "Why didn't you just tell me to go to results?  Then I would have had to have gone."  Guess what, she didn't get last place - no where near last place...

Maybe your daughter needs someone to tell her "no more crying like this, you need to find a different outlet."

Maybe you could brainstorm with her some alternatives - punching a pillow, taking a walk, petting a cat - visiting an animal shelter, going to the library...  

worried mom
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Psycho_Mom
Hi,

OK, I am not clear on your d's age, on whether or not she is weight restored, and if you are doing FBT and/or Magic Plate?

If your d is NOT weight restored (and be aware that many programs set the weight goal much too low--they maintain physical health but do not achieve mental recovery) then what she needs is of course MORE FOOD!!!

If your d IS weight restored (and I would believe this is you have a complete individual growth history and your d is currently at or above it and has been for a while) then she may perhaps benefit from medication?

But frankly, I'd guess the former. How old is your d, how much does she weigh, how much did she weigh before illness onset? Be aware that there is a thing called Extinction Burst: when a sufferer gains enough to be close to wr, their symptoms can increase and the anxiety is severe. (The solution is MORE FOOD!!! and more weight, and then after that, things will get easier.)

I think it is also telling that your d goes along all day at school in a good mood. My d was always in a good mood UNESS SOMEONE MADE HER EAT. Then her ed made her behave very badly! So, does your d eat unsupervised at school? If so, are you sure she is eating?

My d, when ill, was also most horrible to me and at home. This was because everywhere else she felt constrained, but she knew that I would love her no matter what, and so she felt more able to let out her intense anxiety at home. It's extremely, extremely hard, but it's also good, I think. That your d behaves badly at home means that she trusts you to show you how much she is suffering. 

Please let us know more about your situation. Does your d eat regularly, 3 meals and 3 snacks a day? If not, there are lots of suggestions on here about how to make that happen.


best wishes,
D diagnosed with EDNOS May 2013 at age 15, refed at home Aug 2013, since then symptoms gradually lessened and we retaught her how to feed and care for herself, including individual therapy, family skills DBT class, SSRI medication and relapse-prevention strategies. Anxiety was pre-existing and I believe she was sporadically restricting since about age 9. She now eats and behaves like any normal older teen, and is enjoying school, friends, sports, music and thinking about the future.
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