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chester

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Reply with quote  #1 
my wife apparently collapsed at work, shes been dealing with an ED since ive known her and ive knownher for over 20 years now.  it's been off and on.  She'd get pregnant, eat normally for the baby...we have 2 boys, 7 and 1 and she is still breastfeeding the 1 year old.  but after the baby was born she went back to restricting, eating weird meals

she collapsed at work today snd she's been in the ER. my mother is there with her and ive been getting texts.  i'm actually severely ill myself and unable to do anything without full time caregiver so im waiting to be ale to go to the hospital and advocate for her.  My mom is going to come take me to the hospital

rightnow they are just getting her heart rate stable.  i'm just so afraid that they're going to admit her to a psych ward.  her weight is very low.  her blood pressure is very low and they said that her heart rate is very low.  

for the longest time she wouldnt get any help becuse she was raped on a psych ward when she was 13 years old, got pregnant with his baby and then miscarried.  so all this horrible trauma.  she was in psychiatric environments all through her teen years and they were really invalidating environments that shamed her for having an illness, and left her with a general sense of feeling incapable and powerless, and retraumatized.  she has c-ptsd and gets flashbacks.  I just think that despite how much i want her to get better i dont have much hope that a psychiatric hospitalization will be at all helpful because these places are usually not trauma informed.  She says she was never put in the quiet room but she can still hear the children screaming in the quiet room, even just going to therapy gave her flashbacks for the longest time.  

but theres only so much i can do.  i FINALLY got her to go to a new psychiatrist he specializes in trauma and he does both medication and psychotherapy.  weve had a few sessions.  She won't go to the sessions without me because she doesnt feel safe being in a room alone with a mental health clinician.  I asked if she would go to a female therapist and she said that they dont make her feel any safer because of the power dynamic.  She feels like theres this power dynamic between the therapist and client, where the therapist is morally superior and she is the worthless mentally ill patient whose perspective doesnt matter and no one will believe her word on anything.  i think this is from being abused in a psychiatric ward and no one believed her.

so right now i have to go to this hospital and i'm so scared theyre going to admit her to a psych ward.  is there anything I can say to them to convince them not to?  Is there anything her psychiatrist can do?  Right now she hasnt even told thenew psychiatrist because she is still feeling him out and trying to figure out if he'll believe her.  not many people know about her abuse both as a child and on the psych ward.


chester

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Reply with quote  #2 
im also wondering.... do i try to contact the psychiatrist is there anything he can do to advise the hospital staff on how to manage her anorexia?  he was recommending going to see him twice a week and he is still working out a diagnosis and establishing trust.  he says without trust you have nothing.
Foodsupport_AUS

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Reply with quote  #3 
Chester I am so sorry to hear that your wife is in the hospital. If her heart is the issue, she may need an acute medical ward/coronary care before any consideration of other care. Generally psychiatric wards are not suitable for this sort of care, so it doesn't sound as though that would be on the cards. Her physical health sounds as though it is critical and needs to be addressed urgently previous trauma or not. 
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D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
deenl

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Reply with quote  #4 
Dear chester,

I am so sorry to hear of the difficulties both you and your wife are going through. As Foodsupport says, cardiac conditions must take priority and any treatment must be aimed at reducing the risk of permanent heart damage. I hope that the tests come back with good news because you and your kids need their mom healthy and, in time, happy.

I do know of someone who struggles with both trauma and an eating disorder. From what I know about this one case both the trauma and ED need to be addressed together. In the beginning the ED treatment team did not know about the trauma. Without that knowledge some of the elements of the treatment were unfortunately triggering. Since they have become aware of the trauma, they have been able to adapt the treatment plan to support recovery from both.

So in your position, I would inform all the treatment teams of her full medical history including the trauma. Without that knowledge no treatment team, either medical or psychiatric, can make optimal decisions and recommendations.

Wishing you and your family strength, courage and lots of luck.

Warm wishes,

D

__________________
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )
  • We cannot control the wind but we can direct the sail.
chester

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Reply with quote  #5 
right now they admitted her to the cardiology unit and she's havinga  bunch of tests done.  I was able to see her late last night when they admitted her to cardiology and i hate that I'm not well enough to be there with her for the whole thing, the way she is whenever I"m in the hospital (which is ALL THE TIME as i have mitochondrial disease.  she's been a full time caregiver for me for many years.  I've always been "the sick one" and she's always been working full time, keeping our family afloat.  so my mother has been doing my care and I only have so much energy.  i feel very guilty that i can't advocate for her in the hospital but theyve been calling me and she hasbeen in contact with me via text which is good.  

the thing is, if they eventually send her to a specialized eating disorders unit, isn't that a locked facility?  I'm worried they are going to send her to one without letting us choose which one to take her to if it's TRULY medically necessary

she has been dealing with this since she is a teenager and her awful experiences in therapy have made her never want to go to therapy again.  I've tried so many times taking her to counseling and she'll sit there in the waiting room and have flashbacks and then refuse to go in.  it's just awful and I feel like a horrible person for putting her through this retraumatizing process.  That being said, I'm a sexual assault survivor as well and since I have frequent hospitalizations and I have my own sensory triggers and difficulties with touch, she has this letter from my therapist that EVERY SINGLE caregiver receives and she's always 100% on the ball with informing every single care staff that I"m a sexual assault survivor and that they need to make accomodations with how they handle me.  But then, I tell her, We need to tell all these staff members that you're a survivor and she says, "No, they can't know, they aren't going to believe me."  How is it that she thinks they'll believe me, but not her?  It makes no sense.

she will take medication and she got diagnosed bipolar in her teens and shes been on lamictal for years.  but weve been feeling like things werent getting anywhere with her old psychiatrist.  Quite frankly, I doubt the bipolar diagnosis and I think that a lot of what they think of as "hypomania" is actually extreme anxiety and hypervigilance due to the trauma.  But they can't know about the trauma if she doesn't tell them.  She insists that no one will believe her and that they're going to think she's being manipulative, because that is how psychiatric professionals view people who talk about sexual assaults [frown]  I guess that is how people treated her when she was a teen going through the mental health system in the 90's.  

The anorexia is really the tip of the iceberg.  I think after being sexually abused by her dad, and then raped on a psych ward as a teen, this gives her some feeling of CONTROL over her body.  And I think she carries a lot of SHAME after the sexual abuse and this is a way to punish herself.  I carry shame from sexual assault and i have the same urges, to self injure, and to punish myself, and the only reason I don't act on them is because it happened to me when I was older and I have more coping skills.  and i'm in therapy.

The self injury is her other main way of coping.  she's self injured since before i met her too.  When I married her I thought "These are just teenage girl problems and they will go away when we get older."  So we got married.  Now 14 years of marriage later and 2 kids later these problems have not goine away.  I pushed, and I encouraged, and I have made so many attempts at getting her help.  She said she wants to get help for me and the boys now I think mostly because she's scared of inpatient hospitalization.  I worry about her being abused again in one of those places.  I don't know how it will be possible for me to advocate for her when she's in a locked facility with restrictive visiting hours.  IT seems to me that this kind of environment almost ENCOURAGES abuse because the patient has no one to advocate for them within the hospital.  When she was on an eating disorders unit before, I never saw her room I only saw the day room.  That's the "front end."  My wife tells me it was retraumatizing to hear people screaming in the quiet room and she has this fear that they're going to restrain her, even though she was always a "compliant" sort of patient.  

Everytime she's been hospitalized it's been heart wrenching for me to see and she spends the whole time basically in a retraumatizing flashback where she can't really learn any new coping skills because she's just reliving the past trauma.


mjkz

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Reply with quote  #6 
Chester, I feel for your wife as my daughter has trauma issues as well as a severe eating disorder.  Part of her trauma stemmed from things that happened to her while inpatient. 

Quite honestly we had to do most of her work at home due to trauma issues using the hospital when she was too unsafe to keep home.  She works with an outstanding therapist who understands both trauma, eating disorders and also how trauma can result in behaviors typically seen in borderline personality disorder as can eating disorders.  The bottom line though is that your wife has to be medically stable and safe to do the work at home and if she can't, then she needs to be in a hospital. 

You may need to be more forthcoming with her treatment team and let them know the trauma she has suffered.  They can't help what they don't know about and keeping her trauma secret just allows the trauma to flourish and keep her from recovering from either thing.  It sounds like something has to change and she isn't able to do it at home.  You may need to look for your care elsewhere so that she can focus her energy and time on getting herself stable.  I would encourage you to tell her medical team the kinds of issues she is dealing with and that will help them find a place for her that can deal with both kinds of issues.  We found the hard way that working on one or the other just doesn't work.  If we focused on getting her weight up, her flashbacks, etc. were out of control and if we focused just on her trauma issues, then she was binging and purging 20 times a day.

It sounds like she needs an advocate right now to help her find a safe place to get her weight up and deal with the trauma issues until she is safe to come home.  I can't encourage you enough to speak up for her if she is not able to be honest and maybe she can get treatment that is effective and helps.
Foodsupport_AUS

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Reply with quote  #7 
I am not sure why she would be in a locked facility. Many treatment places are voluntary and an adult is able to leave at will. Your wife as you state has been able to eat well in the past for the well being of her baby, so she is able to do this again for her own well being and again  the well being of her children and husband. Ideally she should have treatment in the least restrictive environment that allows her to recover, that would potentially include outpatient treatment. 
__________________
D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
chester

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Reply with quote  #8 
so...they sent her to an eating disorders unit with a medical behavioral bed because her heart wasnt stable enough to go to a regular eating disorders unit... they put in an NG tube because she wasnt eating.  eating triggers horrible flashbacks ofher abuse, and one way she copes with the flashbacks is self injury...usually cutting.  but of course they werent letting her do that in the hospital, so this has thrown her off kilter and she isn't emotionally stable enough to be at home.  shehas been in the hospital for over a month now, currently out of the medical behavioral bed and in the other part of thehospital but its very hard for them to get her to eat because of the trauma.  Every time I visit (which is 2 measly hours a day and more on the weekends) she's very flat emotionally.  she's always happy to see me but struggles a lot to keep it together and i know she's struggling to stay present in the moment and not reliving times when she was inpatient and traumatic things happened to her..she was raped on a psych ward once in addition to the sexual abuse she suffered as a young kid

so far the place is pretty trauma informed and she actually seems to be talking to her therapist although it's taken a month.  her psychiatrist has her on this combination of prozac and zyprexa as well as some anti anxiety medication.  She refuses to swallow pills,because that is another trigger, but she gets them through the tube.  She says that she is feeling OK about the feeding tube but just really can't emotionally cope with the act of swallowing things and eating brings back memories of the sexual abuse so the tube just keeps her nourished and medicated and hydrated without causing too much distress.

So her doc is actually talking about a PEG for when she gets out of the hospital, because this is going to take a long time and she's not ready to do any serious trauma work right now until her weight is up and she has some coping skills and has done some DBT and is using her skills they are supposedly teaching in this program.  but she sself injures every chance she gets and has tried throwing herself against the wall, biting herself, hitting her head against the bathroom tile, etc.  

what has made this so hard is that she doesn't want me to bring our sons to visit.  They are 7years and 16 months.   I have mitochondrial disease so they've visited me in thehospital countless times.  THey've seen me with G tubes, colostomy bags, EEG wires on my head, I have a tracheostomy, it's the whole medical shebang and they're really used to it, but for some reason when it's a psychiatric related floor she doesn't want them to even know why she's in the hospital.  So my boys just know that their mom is sick, and that she isn't up to having visitors, but not anything about why or what's going on.  so that's causing my older son a lot of anxiety.  I don't feel great about this, but I don't want to alienate  my wife or cause her any more stress than she has in the hospital.  Normally when she does stuff like traveling for work she calls or will do facetime every day.  

i'm also really struggling with the restrictive visiting hours. idont know why they have to be so damn restrictive.  i have so many medical issues and it's so hard for me to have the energy to handle the car ride to go see her.  i have to budget allof my energy for it, an a lot of the time, I can't do it because I dont feel well.  so i cant just go when i feel up to it there's fixed hours, which makes me upset.  whereas when ive been in the hospital, my wife doesnt leave my side.  

i'm just feeling so hopeless right now.  i dont know when she'll ever eat again or be OK enough to go home.  She struggles to get through even an hour without self injuring.  Restriction is gone and that is pushing her to want to cut, because cutting is her way of regulating feelings.  

she's also worried about losing her job.  she can get 3 months of FMLA until it starts being a major problem.  then there is the issue of going back to work and having everyone there know you've been in the hospital.  They barely coped when she took 3 monthslast year  to care for me after I had to transition to using a ventilator.  She says she can't go back there and show her face in that office again.  unfortunately, stigma is a very real thing 






Foodsupport_AUS

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Reply with quote  #9 
Things sound really tough in the Chester house still. Have you spoken to them about options for visiting given your own physical health issues, one would hope they could consider some form of compromise. As for your wife and not seeing the children, at some point she needs to know that her refusal to see them may be doing them harm.

There is not much you csn do about her work whilst she is so ill.

__________________
D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
tina72

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Reply with quote  #10 
Hi chester,
so sorry for what you have to stand at the moment. Great that she is safe and in an ED unit. Maybe a tube will be good for the start. She cannot fight her psychological problems while being underweight, that doubles all problems.
For self injurie: Can you bring her something to do with her hands? Can you ask her for example to knit something for your sons?
Children: I don´t think your elder son will realise that this is a psychiatric ward and your younger son will surely not. I remember visiting my father in a psychiatric ward at age 9 or 10 and even then I didn´t realise what this was. Can she go outside and see her boys in the garden?
Visiting times: That is really bad and not accepteble in your situation. Is there any social service there you can ask for an exeption? Rules are made to be broken. Please try to ask somebody to help you with that.
Job: To speak openly, I think your wife has much more other problems now than her job. If she doesn´t get to solve those, she will lose her job anyway. So try not to talk about that and give her some hope that she doesn´t have to go back if she doesn´t want and that she will find another great job. Fake it if necessary.
Stigma is a big problem for us all. My d was very afraid to go back to school after 3 months in IP. But her state was much better than your wife seems to be at the moment and so she went back and it was not as she expected (everyone was nice and helpful and no one even mentioned IP). You will find a way to cope with that if the time is right.

"i'm just feeling so hopeless right now.  i dont know when she'll ever eat again or be OK enough to go home.  She struggles to get through even an hour without self injuring.  Restriction is gone and that is pushing her to want to cut, because cutting is her way of regulating feelings."
I so remember how it was when my d was in IP. They told me they don´t know when she will get out. They told me they don´t know if she could live a normal life or live in a psychiatric ward for the rest of her life. I couldn´t imagine how to get her to eat something when she was back home.
But with every kg she gained some problems faded away. So I hope that your wife will feel better and struggle less in a couple of weeks. Without re-feeding you cannot start with anything, so this is your first step now. Take it one day after another. You are on the bottom. It could only get better...[smile]

Send you a big virtual hug from Germany,
Tina72
mjkz

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Reply with quote  #11 
Quote:
so far the place is pretty trauma informed and she actually seems to be talking to her therapist although it's taken a month. 


That's great.  I'm glad they didn't just send her home.  You needed something to break the vicious cycle she was in and this sounds like it is doing just that.

Over here in the US, they wouldn't allow a kid under the age of 16 or 18 on an adult psych unit to visit.  If your wife is as you describe, it is probably better that they don't see her until she can stabilize and be more available to them.  You really don't want your kids to see their mom trying to bang her head on a wall or trying to cut herself because she has to have calories put down a tube.  Not only will that traumatize them but also send some pretty bad messages about food that you don't want them to pick up.

Have you tried talking to the hospital about your limitations and freeing up time to visit?  Over here on this side of the pond, we do have much stricter visiting times that are pretty much adhered too on an adult unit but there can allowances made for physical illnesses, etc.  If you are better in the mornings, then try to see if you can go in the mornings.  If they say no on the unit, talk to the unit manager, then her pdoc, and work your way up the line.  Don't take no for an answer.  My daughter has trauma issues that get really bad at night so I needed to visit her at night more than during the day.  There was a room that they allowed us to use that was attached to the locked unit but not actually on the unit itself to have visiting time at night because visiting hours ended at like 7:00 pm.  I talked to the unit, then the charge nurse, then recipient rights, then risk management, etc.  No was not an answer I would accept so I kept pushing until someone made it happen.  You have even better reasons than I did to adjust visiting hours.

I would also ask your wife if she wants you to visit more often and for longer.  Sometimes it was all my daughter could do to keep herself safe and grounded so she didn't want to see me at times.  She was just wiped physically and mentally.  This is not a sprint but a marathon (as is your mitochondrial disorder) so understand she may not be able to see you as often or as long as you would like.

I wouldn't even talk with her about work or anything like that.  She is in no place to even deal with that or be able to appropriately judge whether she will be able to go back.  I do think you have to tell your older son something but I would keep it simple.  He might be medically sophisticated because he has seen you go through a lot but as much as we would love to say psychiatric and medical-no difference, that isn't often true.  The medical may not scare him but mommy acting way different may.  What about talking to her on the telephone?  She must have access to a telephone so she could at least talk to both of them for a few minutes which may help the anxiety.

I would concentrate on the here and now rather than will she ever be able to eat and come home.  It is really depressing if you try to take it all at once so one day at time is a good way to go.  It sounds like she is better than she was a month ago physically and that is a good thing.  Often times physical gets better before mental catches up so try to give yourselves a break.
deenl

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Reply with quote  #12 
Hi chester,

I really sympathise with the difficulties you are having. I do think the place your wife is in sounds really good. There is no way to recover from trauma or an ED without going through really tough times. But it's really tough for us caregivers to see. Might I suggest that if you have a therapist that you work on tips and techniques that help you to tolerate the distress that you feel. I know that with my son I sometimes had to push him into and through tough times with the knowledge that better times were ahead.

Just a practical tip for the kids; I coached my other two kids about what they could do to help their brother. They were really glad to have something practical to do. So for your kids I would think along the lines of letter or pictures for mum, a yard project they could do now that spring is on the horizon that could be ready when mom comes home, etc. Remember it is not about the quality/success of the project but about the kids feeling empowered to help and support their mum. My non Ed sons felt less out of control and useless once they had practical steps they could take and an occupation that kept them busy.

Warm wishes,
D

__________________
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )
  • We cannot control the wind but we can direct the sail.
Torie

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Reply with quote  #13 
Quote:
Originally Posted by deenl
I know that with my son I sometimes had to push him into and through tough times with the knowledge that better times were ahead.


Such an important point.  As hard as it is to push our loved ones into these tough times, it's what we have to do to help them in the long run.  Ugh.  Not a role anyone wants.  Your w is lucky you are doing this.

I also agree with what mjkz said.

Sorry your family has these challenges.  But keep going and you will get through.

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
Mamaroo

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Reply with quote  #14 
Hi, so sorry to hear about your wife. It must be really tough! AS Tina said, maybe bring her something to distract her from the anxiety. My loved doing the adult colouring in. She also did some very basic needlework. Look in the craft section of most shops, they usually have some craft ideas. My d also loved reading books, that may also be a good distraction. I took books like Tintin and Asterix. I have to admit, I also enjoyed reading them. Sending you lots of best wishes!
__________________
D became obsessed with exercise at age 9. Started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for a year and WR at age 11 in March 2017. She is back to her old happy self and can eat anything put in front of her. Now working on intuitive eating.
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