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Sotired

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Reply with quote  #26 
Hi mummy UK, mjkz, and peachdream,
Re tube feeding,this is how we have kept her weight recovered to a certain extent but there has been very little if any brain healing.thrive have taken the tube out as d wasn't compliant with having bolus feeds through it any longer.the plan seems to have changed without our input so usually she would be in hospital now but she isn't.this may mean that starship have refused any more extensions and I can't say I blame them at this point.we are completely in the dark about what the hell is going on til tomorrow at our weekly meeting.meantime they have said her overnight leave tonight is going ahead.
Although we have tried to make it clear to her what our expectations are because her anorexia is in the driving seat with her she cannot understand our point of view.she thinks it's enough that she no longer wants to die.i disagree.my husband just wants a peaceful house with no shouting(except his).other than CFU I don't think there is anywhere else she could go.CFU would not feed her.
Currently we are trying to work out a plan where she at least goes to REDS for therapy and doctor checks.we have written our concerns down and will go from there.when anorexia is in control she makes our lives a living hell and also that of her sister and brother so I will need to have things for them to go to so their contact with her is less.looking forward to coffee on Sunday peachdream...I may cry,just be warned [frown]

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Sotired42
AUSSIEedfamily

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Reply with quote  #27 
Dear Sotired,

So what don't your team understand about treatment of eating disorders? Are any of the team members of ANZAED? If they are then may be they need to read the latest in patient position statement & if they don't understand it then maybe they can take a visit to Westmead & learn.

 
Attached Files
pdf ANZAED_Position_Statement_on_Inpatient_Services_for_Eat...orders_2015-1.pdf (148.56 KB, 30 views)


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ED Dad

PeachdreamNZ

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Reply with quote  #28 
I would love to know why thrive have changed the plans again without notifying you.  It seems they get to decide when somethings too hard for them and you are the last person to find out about it.  I realise they say they only treat people who are wanting help but that breaks the fundamental premise that a mind consumed by ed is unable to help itself.  That's just a cop out!  Your d is legally a minor and she is also under the MHA for enforced treatment, what on earth type of professionals would just ignore all of that and not treat her because she's not wanting it?  I'm so flaming mad for you sotired but I hope you have had some time to unwind and get ready for her overnight visit.
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D age 14 dx with RAN and depression April 2015.  3 IP visits from June to August 2015. Now above wr but still struggling with strong anorexic thoughts and depression.
Sotired

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Reply with quote  #29 
She came home at lunchtime but I just told her dad that as he sanctioned it,he had to stay home today to deal with any fallout.so of course,she is being perfect.i am getting too tired to deal with this.i read the guidelines aussiedfamily but the NZ system has no Westmead.and seems to not have a lot of guidelines either...
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Sotired42
Sotired

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Reply with quote  #30 
In terms of being legally a minor,it appears that without any of us knowing,in NZ that seems to have been changed to 17.so they can't vote,but apparently caring for them is off the board too.i wish we had a Westmead, it sounds amazing.ive talked about it with my h but it just wouldn't be fair on the other kids.or me,my support system is here.i think the people from REDS went to the conference but no changes except for the worse have happened in NZ.hospital stays are a lot shorter,the people who teach us FBT just say feed them.all well and good but sometimes it doesn't matter what we do,they don't eat.the support group is for FBTers so I have been gently discouraged from attending by the founders.so with my hs support,she will self discharge from thrive and I will deal with everything again.in thrives defence,the lead pyschiatrist wanted her to continue the plan but my h won't.he says 18 admissions is enough,he's done.meeting tomorrow so will just see what happens. She is talking about weighing 49.5kg now,a kilo up from her last offer.nearly two years in and I'm already worn out,what has happened to me?im sure I used to be strong.even too tired to be angry.
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Sotired42
Morgana

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Reply with quote  #31 
You seem to be battling a few fronts- your d, the system and your h. Does your h go to the meetings? Could he be persuaded by the lead psychiatrist who wants her to continue the plan? It is so frustrating reading about the NZ system. Why have the FBT support group founders suggested you not attend, that doesn't sound very supportive. I wish I had something to suggest. You are strong, stronger than you realise. It's just your challenges have grown, so you don't see how your strength has increased. Your d is lucky to have such a committed mum, even though she may not realise it. 
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15yr old d. June 2014 stomach pain. Medical investigations until Feb 2015, referred to CAMHs dx food anxiety. Kept restricting and losing weight until July 2015, medically unstable. Began intensive re-feeding at home. Re-evaluated by psychiatrist, dx Autism Spectrum Disorder and Atypical AN.
Found out it's actually Typical AN.
IP from Oct 15, ng tube Nov. Re-started eating food July 2016. Discharged from IP August 2016 97% weight for height.
PeachdreamNZ

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Reply with quote  #32 
Hope your h reconsiders keeping on with the plan for a bit longer.  ED is pretty stubborn and sometimes you have to just keep on trying the same thing before you get any results.  I'm sure the irony has crossed his mind that he has had enough with admissions and wants her home, but wants home to be quiet and peaceful...I'm afraid with ED along for the ride that's not very likely.  I still feel pretty gutted that REDS version of FBT was so ineffective and caused more problems than it solved for us.  Our private t is so awesome but paying for this every week is not really going to be sustainable for much longer.  Its unlikely my d will ever agree to go back to REDS after their version of FBT caused more problems than it solved.  Even the strongest person, and you really are the most amazingly strong person sotired, needs time to rest and recharge.  Let your H take care of things for this visit and sneak away to take some 'you' time.
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D age 14 dx with RAN and depression April 2015.  3 IP visits from June to August 2015. Now above wr but still struggling with strong anorexic thoughts and depression.
K63

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Reply with quote  #33 
Hi sotired you are having a particularly difficult time at the moment it's hard to keep at it all the time . It's a lot of admissions a lot of emotions and trying to keep the other two kids ok as well. Have they discharged your d for good or what's the plan now. Does your h understand that ye need to be united fully as they play one off against the other as they can do this very well as normal teenagers so they are extra good at it when ed is included . Hope meeting will have a good outcome. Take care of yourself too.
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Daughter started restricting in February 2014, tried re feeding at home hospital admission 4 1/2 months weight restored started restricting post discharge, back on meal plan full supervision weight restored april 2016. Starting to hand back responsibility for meals it's scary. 
Sotired

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Reply with quote  #34 
Thank you for all your kind words morgana,peachdream and. k63,
Her therapist at thrive has put this more in terms of her having a break from residential.my d has been away from us for 9 months which is a long time.3in hospital,6 in thrive.my h is trying his best but his gut feeling is that she needs some time at home.i wonder now that the shock has worn off whether it might not be a bad idea.she is willing to go to day programme twice a week and a reds appointment as well if they suggest that. She is still talking about maintaining at 49.5kg but accepts that if this results in hospital admission that her weight will need to change.i am willing to try this as I cannot hold the line by myself.i just can't.i feel weak and stupid over it but I just want her to try to be home.she has apologised for the violence on Friday and we had a hug and moved on.i feel like I am letting you all down by trying this but what we are doing just isn't working.i feel like a fraud when you all talk about me being strong because at the moment I don't feel like that at all.the only thing strong is my love for my kids and my h.and though love is action not word, I just can't do more than what I have persuaded her to do re day programme and reds.thats all the energy I've got.im sorry guys [frown]

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Sotired42
Morgana

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Reply with quote  #35 
The last thing any of us want id to make you feel worse, you are NOT letting us down at all! I know what you mean though because what is meant as a compliment and encouragement soon becomes a burden, a pressure to live up to it all the time.
I can understand you wanting to try her at home. There are no right and wrong ways, and we have to try different things to see how it works. Being at home might calm your d down enough to see a way to getting better, and give your h a chance to support you and her in his own way. You both have the same goal for your d, to get her better.
Whatever you do, we support you and your family, that's what we are here for. 

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15yr old d. June 2014 stomach pain. Medical investigations until Feb 2015, referred to CAMHs dx food anxiety. Kept restricting and losing weight until July 2015, medically unstable. Began intensive re-feeding at home. Re-evaluated by psychiatrist, dx Autism Spectrum Disorder and Atypical AN.
Found out it's actually Typical AN.
IP from Oct 15, ng tube Nov. Re-started eating food July 2016. Discharged from IP August 2016 97% weight for height.
mumto3

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Posts: 443
Reply with quote  #36 
As long as you have a back-up plan, there is no harm in trying for her to be home - you may need to remind her of the back up plan and what happens if she loses weight.  I know I felt I couldn't do this and when friends told me I was doing an amazing job, I felt like a fraud - it is the hardest work I have ever done...
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PeachdreamNZ

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Reply with quote  #37 
Hi sotired, you are the one living this so whatever decisions you make we know it was not lack of strength but the option had some merit!  This ed life can change quickly while never seeming to change at all..if that makes sense..  Will your d agree to stay with her schooling.  Its only a few weeks til exams, not sure if she was doing any papers with externals, but it would be worth getting those.  In my job I deal with plenty of 16-18 year olds who have dropped out of schooling and its quite sad how much they are restricting their futures by not persuing a good basic education.  These days level 2 is really important..they can always return to it later on but in the cases I see they have usually had another baby or made some other decision that means they never get around to it.  Its great that she has agreed to attend day programme two days a week, but do you have some fail safe for when she becomes unstable again?  We are on your side sotired, no matter what, please remember that[smile]
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D age 14 dx with RAN and depression April 2015.  3 IP visits from June to August 2015. Now above wr but still struggling with strong anorexic thoughts and depression.
Elena

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Posts: 547
Reply with quote  #38 
No dear, you are not letting anyone down! You are just trying anything and everything you can for your D and your family. It is important to try to keep things right between you and your h, the two of you together are far greater and stronger than either of you on your own, and that is important for your whole family. I'm just passing on some advice given to me yesterday for ourselves!!!! Sometimes the best thing we can do for our kids is to invest in the health of our own relationship.  Having her home will be hard, but so is having her at thrive or hospital, and just maybe it will make a positive difference.  Take care of yourself, and do what feels right to you and don't care what others think.
Sotired

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Reply with quote  #39 
Hi morgana,peachdream,mumto3 and elena,
Had meeting with ds residential team (I read the post Leah) and it turned out they were happy that my h insisted on the fact d would be coming home.we do feel that our d has made some mental progress in residential,she no longer wants to die.as this was her sole focus for a long long time so that alone is huge progress.school is going to be kept on the back burner for now,she has credits towards level two and will finish them later.
Our d will attend the day programme three days a week and will have a weekly obs check at our doctors. So there are checks built in to the process.she will also attend hospital for rehydration if necessary.we may be able to keep starship on board but if not,will liaise with north shore hospital.we spent a while in the meeting nutting all this out.i may be panicky,but I still talked with d to get this organised, trust me [wink]
The team can't believe we are willing to have her home but it's been 9 months.she always does a bit better in summer anyway so it will be interesting to see.residential can still happen later on but we all think that some time where she can hang with us,see her boyfriend more if she wants to and still attend day programme will be good.and if it all turns to custard then we will try a new plan.you are all such an amazing support to me, I took all your thoughts on board and made certain we have things in place,you guys did my checklist and that really helped.
On to the merry go round I go,where we stop,nobody knows [smile]

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Sotired42
K63

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Reply with quote  #40 
Hi sotired, this sounds like a good plan with this illness we need to keep changing plan if one thing isn't working we need to do something else.i would have loved a day programmes for my d but they were only in dublin 3 hours away so not feasible at all . You also have somewhere to go for hydration and the obs check weekly.it will take time to adjust to the changes of having d at home hopefully this will settle after a while. Wishing ye the best . Ensure you fit in you time as after discharge it can be overwhelming for a while.
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Daughter started restricting in February 2014, tried re feeding at home hospital admission 4 1/2 months weight restored started restricting post discharge, back on meal plan full supervision weight restored april 2016. Starting to hand back responsibility for meals it's scary. 
JustFlippinEatItNZ

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Reply with quote  #41 
Wow - sounds like a busy week, sotired - Lots of changes! Hopefully there will be some up-sides to them. Sounds like quite an upheaval in your life coming up. When does it all happen? 
Plodding along here - samesame, no gain. 

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17yo D, AN since Sept 2014. BMI 19.
Onward and upward - a gram at a time.
Sotired

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Reply with quote  #42 
Maybe you should switch to peachdreams therapist?it just sounds like you are throwing good money after bad,she doesn't seem to have helped at all.is your d needing another starship admission maybe?yeah,lots of changes here,I certainly don't agree with all of them but at least my d is not actively suicidal at the moment.i worry that as her weight drops those behaviours will return and I don't know how I will cope.but she has done a lot of therapy since then,she is very happy with her boyfriend and hopefully she will behave til small boys birthday is finished.peach and I are doing coffee on sun,you wanna come too?my tummy has been in knots all day but the first day is done.tomorrow she has an obs check at my doc (I have an appt so she will get her obs done) so I have told her I don't want to fail at having her home in the first 48 hours,hopefully she will pay attention.
I hear what you are saying k63.thats why my d will be at day programme three days a week and has the option to increase to five days if she wants.she will go in with her dad so will spend some time at his work,go do day programme and then he will pick her up and bring her home.i will continue my gym time and make sure I take time for me.i have made no promises about returning home for good,this to me is a break,or a trial period.if she is too difficult then we will need to think about her returning to residential care as I have to look after myself.
How are you going?is your d putting on any weight?is your h doing ok now?hope all is going ok.[smile]

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Sotired42
Elena

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Reply with quote  #43 
Thinking of you and hoping that your change of plan works, for a while at least. Good luck!
JustFlippinEatItNZ

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Reply with quote  #44 
omg - so she is home already! Thinking of you..
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17yo D, AN since Sept 2014. BMI 19.
Onward and upward - a gram at a time.
Sotired

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Reply with quote  #45 
Day two...d is eating still.took to doc,obs are fine.had a rip roaring argument about her going to Christchurch to study,when challenged to find a course closer to home,she was go smacked when I found one!and it's not $8000 +living costs.throwing challenges at me all the time but we are muddling through.just hoping the momentum continues,we have been here too many times and then an has won over us.we argued but then we talked and now we both hear the other persons point of view.will be going to the gym for self care tomorrow and then prepping for small boys party.seems very full on right now! Coffee on Sunday round 10am ok peachdream?in Albany if that's closer to you (you know my rubbish sense of direction [smile] )otherwise I'm open to suggestions.
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Sotired42
Elena

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Reply with quote  #46 
Well done for getting to day 2 OK! I hope the small boys party goes well. Thinking of you.
Sotired

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Reply with quote  #47 
Thanks elena.just feel a bit frozen.lots to do but nothing done.wish this had happened next week after the party.
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Sotired42
Elena

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Reply with quote  #48 
Yep, I know that frozen feeling, been feeling like that a lot myself recently, and getting anything done seems just so hard. Along with the perpetual headache and sore jaw from clenching it all the time. Hard to get motivated to do anything. Hang in there, hopefully this will get easier, it just might take time! Life is full of ups and downs, and we could do with some up time soon!
Sotired

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Reply with quote  #49 
Oh thank god,so not just me with the clenched jaw and the tension headache?i always have anxiety round my kids birthdays anyway,I throw a good party but find it immensely stressful.was walking the dog and realised the party is tomorrow and I don't even have the party food.i do have all the decorations but haven't done the baking.am so focused on just trying to survive each day without pain that I just haven't figured this out.spent last night researching the baking course my d wants to do next year instead of sorting out small boys birthday.stomach in knots.i need to just put my big girl pants on and get this done.i can do this.it will be ok.it doesn't have to be perfect,just good enough.i will be my own cheerleader.
( today I need all the positive self talk I can get)

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Sotired42
Elena

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Reply with quote  #50 
No not just you. Yep, time for those big girl pants I'm afraid.  I find the only thing to do is just make a start, does not matter where I start, so long as I start. I always do too much for parties and afterwards I'm absolutely exhausted. I think the kids would enjoy it just as much if I kept it more simple. So don't do what I do! Parties are hard because we all have a strained relationship with food these days, but you definitely can do it. Have fun.
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