Registered: 1407160119 Posts: 62
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It has been a little while since I have been on this site but lots has happened. A recap: D hospitalized 1st time in Feb 2014 for RAN at 15. Discharged and attended outpatients where she fooled everyone and lost all of the weight. Told to do home hospitalization which was a nightmare (violence) and resulted in her jumping out of the 2nd floor window when we tried LSUYE. Following jump, sectioned and 2nd hospitalization in Aug 2014. Likely post traumatic stress and a psychological break prompted the Eating disorder psychiatrist to relieve parents of meal duty and then a suggestion that our daughter go into foster care. She did a good job of keeping on the weight for 3 months while in foster care but was paranoid about the food. I ate out with her about 3-4 nights per week. Daughter came home at Christmas/New Years 2015, more because she could not handle the living arrangements in foster care. Food restriction declined slowly at first and then became significant the summer of 2015 when she became vegan. Thought this time she refused to go to the doctor or eat meals with us. The vegan diet really affected her. We experienced bipolar behaviour. Had to play hard ball in the fall of 2015 to get her to go to her eating disorder psychiatrist. Finally, she was convinced by the psychiatrist to readmit herself in Feb 2016. Because of her age, 17 by this time, the eating disorder program gave her a lot of freeway. This meant that she did not gain any weight. Eventually, they had to tighten the reins. She ended up having a psychological breakdown so severe that she had to be sent to the youth psychiatric inpatient unit where she was to stay for the next 4 months. During this time she worked but was not well enough to perform school and had to drop a course during her graduating year. Just when you think things can't get worse (they did). Eventually, she was forced to take medication but the youth inpatient unit is not "equipped" to address eating disorders." Pretty wrong if you ask me. So, she made progress with the psychosis but not with the eating disorder despite my pleas. During this time there were lots of drives given to her from my husband and I, trips second hand shopping, some restaurant eating at vegan restaurants (everything to suit her, but good relationship building) During her inpatient stay, she did some weekend passes that went pretty well until about a month ago. She believed that she overate and tried to purge. This is not something we had every experienced before, consequently, things got out of hand and we eventually had to call the cops because we would concerned about her safety. The negative of this was that she is again not comfortable staying at home. The positive is that she knows that if she is violent or suicidal, we will call the cops. In any event, in talking about the discharge plan with the psy doctors, we were very clear that we did not want her to go to a shelter as we were concerned, above and beyond her not eating enough and a variety (she is at a very low weight and malnourished), about the interpersonal issues she might encounter at a shelter as my daughter has lead a sheltered life ( top student, formerly, top athlete etc., parents and sibling who have gone above and beyond to accommodate her sound and smell issues and overall demands- regressed in maturity, impulse control, inability to handle stress/criticism and social anxiety etc.   AKA- no streets smarts or ability to handle interpersonal conflict Last Wed, out of the blue, they suggest that she go back to the eating disorder unit. She says no. So, they discharged her without a place to live and without a supply of medication. She had about 4-5 pills then which will have run out today. Tomorrow, I am going to call the ombudsman. She is staying at a friends now but this is only short term. D has convinced herself that she needs to be independent ( which is delusional because she is so restrictive of her food, finances, etc. that she is more dependent on us now than she was at 12- she was very responsible as a child). Nonetheless, she want to try and learn how to take care of herself and learn who she is, and for this she believes she needs to leave elsewhere. Also, earlier she mentioned that she can't be herself at home- which makes me wonder if it is because we told her that she is not allow to purge in out home. This is tricky because we haven't caught her purging but there have been some signs. However, we could just be paranoid. So, above and beyond the best living arrangements which would be an eating disorder program or home, what would be best? 1) a transitional program where there is staff but other youths who could influence her negatively ( I am worried about bullying, drugs, others with eating disorders etc) 2) living on her own as she could get funding via CAS I guess it is that I don't know what to expect from the shelter. Does anyone else have experience here. Thanks __________________ D 19, dx with RAN in March 2014. 6 hospital and 2 psychiatric inpatient stay. Not living at home and just completed first year of university
Registered: 1438737617 Posts: 1,541
Reply with quote #2
Wow. I wish I could say I don't believe they discharged her like that but they probably viewed her as noncompliant and due to her age just let her go. Do you really have a choice of where she goes given her age and her wants?
I was in a similar situation with my daughter who was living with me at home and going downhill fast. She would not participate in any therapy, seeing doctors, was purging everything she ate and was cutting, very depressed, etc. She also had no insurance over here (before kids could stay on parents insurance until the age of 26). I gave her a choice of either starting to eat, not purge and at least make an effort towards recovery or pack her bags and let social service know that she needed to be placed. She chose option 3 when there was no option 3 so I called social services and she was placed in a group home (your option A). She only lasted in the group home a month and at that point they put her in independent living with some daily support because she ate the entire group home's budget of food for six months in that month she was there (and lost weight). She only made it about three weeks in an apartment alone before she was down to about 45% of her ideal body weight and the state had to pay for out of the country treatment because the only hospital in the US that takes people that low in body weight had a waiting list and she couldn't wait. She ended up inpatient for six months being tube fed and on TPN sedated before she was stable enough medically and mentally to even start looking at coming out of the hospital. The end result was that she realized that neither of the two options (same two you are facing) was going to work and she now lives at home and follows the treatment contract we have set up. Looking back, I am glad she went to the group home first (24/7 care) because she was supervised and it gave the people responsible for treating her an idea of what they were dealing with. I think had she gone into independent living in an apartment that she would have starved to death before anyone realized how bad shape she was in and what she was doing. Honestly she was so sick that she probably taught the other people living there tricks with eating and purging. They knew after the first week there they were going to have to find another option for her and I was pretty darn relieved the responsibility for finding a new situation did not fall on me because I had no resources at that point. Now I have guardianship and the legal means to force her into treatment but then I did not. As worried as you are about bullying, etc. I think I'd be far more worried about your daughter living alone and not having supervision. You could provide supervision but will anyone listen to you when she needs to go back inpatient? I had been telling everyone that would listen that my daughter needed inpatient treatment but she was not insurable in the US and there was no way I could afford to pay for her treatment. If your daughter was living on her own, how quickly could you get her inpatient if needed VS if someone who worked at whatever placement could get her in? How successful could you be in convincing her to admit herself if need be VS someone in wherever she could be placed? For me, it really came down to knowing my daughter needed care that I could not access myself and I needed to have her in place where people could get her into the system and get the care she needed. If the access to care is that same no matter where she lived, maybe having her on her own would protect her from other negative influences. Just something to think about anyway. As hard as it was to do it, my daughter would be dead now had I not gone that route and just let her continue at home.
Registered: 1407160119 Posts: 62
Reply with quote #3
Thank you so much for taking the time to share your story and lend advice. I am almost incredulous at the horrors that this illness brings: 45 % of her ideal weight! I admire your strength. I am also grateful for your perspective which highlights the merits of supervision outweighing any negative influences that my daughter might encounter. In the end, you are also right in that I have little say in her choices. Warm regards and best wishes, M __________________ D 19, dx with RAN in March 2014. 6 hospital and 2 psychiatric inpatient stay. Not living at home and just completed first year of university
Registered: 1189031616 Posts: 2,020
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Our experience was also that independent living - she did have a social worker to check in and administer meds - was a disaster! Letting someone who is very ill and unable to accurately judge risks and likely outcomes be unsupported and unsupervised is just SO VERY RISKY! And IMO, somewhat cruel, no matter what the law says about Age of Majority, autonomy & so forth.
Sure, in any group setting, the probability goes up that you will meet someone with different tricks from the ones you know. Absolutely we've seen that. But it is, IMO, the lesser of the two evils, by a WIDE margin. __________________ IrishUp
Registered: 1438737617 Posts: 1,541
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It is far too easy when they live alone for them to isolate and for their own thoughts to become the only input. At least when you have others around, you get more input than from your own sick brain. Things that sound so right and absolutely what one should do when alone often sounds pretty warped (rightfully so) when you get input from others. There is nothing like a person her own age telling her "dude, that is so f*cked up. What are you thinking?"
I really hope that you do get her to a good spot. If that cannot be home, then the next best spot.
Registered: 1410842085 Posts: 420
Reply with quote #6
Excellent turn of phrase, mjkz.
__________________ 19yo D, AN since Sept 2014. Was wt restored for a year or two but now starving again, refusing treatment or to admit she has a problem. BMI guesstimate around 13 or 14. Has left home. Very sad Mum.
Registered: 1407160119 Posts: 62
Reply with quote #7
Thank you for your responses. Alas, I don't have any significant control anyway. Last night she went to a shelter that was basically sleeping on the floor. I doubt she slept at all. She spoke with my husband and sounded euphoric. We have seen this before when her weight was at her lowest 3 years ago. She is now back to being at least 10 kg below her ideal weight. I think she is going to slip back in the clutches of anorexia and have another complete breakdown. She won't return my texts and I am at a loss of what to say that will be helpful. I most often say things that are unhelpful. Any advice
__________________ D 19, dx with RAN in March 2014. 6 hospital and 2 psychiatric inpatient stay. Not living at home and just completed first year of university
Registered: 1431767540 Posts: 1,960
Reply with quote #8
I know it's different in the states but is it possible to put her under the mental health act or a 5150 hold? She is definitely a danger to herself and is also a vulnerable young adult-do you have some laws that give you power to get her treated against her will?
I am so sorry that you are in this position Medford -I suspect this will be us in a few years too
That euphoric state they get into is scary primarily cause we know what it means,always that weight is lost.
I am not the greatest at the best words to use with communication with your d-my own experience is that sometimes I can say the most innocuous thing to have my d take it the wrong way.si maybe be honest.say that you can see things are difficult for her now-they must be otherwise she wouldn't be making this decision which holds her back.that you are happy to find her a supportive living situation where she will be safe.
Again,I don't know what is available where you are in terms of that so I hope that is something that is available?
Practice some self compassion for you as well-they may not have asked for this illness but neither did we.so it's important to look after yourself.
Registered: 1438737617 Posts: 1,541
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Medford, I wish I knew what to say but given what others have shared here, she will probably need to get down to a lower weight before you will be able to use that to try to get her sectioned or a community treatment order.
Were you able to get anywhere with the Ombudsman? What is daughter doing for meds? I hate to say it but you might have to just keep reminding her that you are there, have her keep talking to hubby and hope the crash that is coming gives you leverage to get her the help she needs. I think it is so unfortunate that the people treating your daughter have allowed her ED to triangulate so much against you in particular by letting her go to foster care, etc. It is very scary given her history that she is just out there on her own. I don't know that you have many options other than keeping in touch with her, letting her know you are there if she needs you and keep trying to get her help in any way you can. My hopes and thoughts are with you!!