User’s Guide | Rules | Contact a Moderator | Registration or Login Problems? | Eating Disorders Learning Center | F.E.A.S.T.



Custom Search of F.E.A.S.T. and Forum Content:
Register Latest Topics
 
 
 


Reply
  Author   Comment   Page 3 of 4      Prev   1   2   3   4   Next
Hebrides

Avatar / Picture

Caregiver
Registered:
Posts: 190
Reply with quote  #51 
Thanks, everyone. Sadly the unsettled behaviour continues, more or less. At the end of last week staff reported d was a little more settled, but also that there had been an incident where she had gone behind the sofa and tied a ligature...with her hair. What??? And we noticed that her bedding had disappeared again. 

Although we had a good visit on Saturday (d not wanting to play games but did want to play piano duets with us, and spent a good half hour playing her flute, something she has hardly done at all in the last 3 years), this morning I got a call from the psychiatrist saying she had a bad night, needing 2 staff with her for much of it, and they are trying to find a bed in a PICU  - possibly Maidenhead or Sheffield, but beds are of course like gold dust.... Plus my mother seems to have been getting more frail, unsteady and muddled over the past few weeks and I spent the morning sorting out her shopping and confusion over credit cards etc, while trying to stay positive and calm and respond to her "Is d making any progress?" questions. I just want to curl up in a corner with my book and my knitting and have someone else deal with EVERYTHING else... Meantime I can feel my neck and shoulder muscles tightening and the stress headache starting...

In less than 48 hours we are due to fly to Florence...it has crossed my mind to wonder if somehow the uptick in d's distress and our impending departure are connected (not necessarily in a conscious way, of course). Who knows?

I guess our challenge will be to try to put some mental and emotional, as well as physical, distance between d's situation and our time away, so we can enjoy the benefits of a break we so desperately need. BIG challenge...

Not sure we are managing even 1 step forward, 1 step back at the moment - feels more like giant leaps back into uncharted territory, and increasingly hard to see any sign of a pathway out. But we will not shift from d's side and we WILL get her through this...won't we?

xx 

__________________
Mum to 17 year old daughter with AN,1 year IP from Feb 2015, discharged Feb 2016, WR but mentally nowhere near where she needs to be. Remained stable but rapid weight loss again leading to admission to specialist ED unit Sept 2016. Back round the circle...
mjkz

Avatar / Picture

Caregiver
Registered:
Posts: 771
Reply with quote  #52 
Heb, have a good vacation and truly let things go.  One rule I always follow even when daughter is in the hospital is to check my messages and email once a day if that. Otherwise the vacation gets lost in the everyday stuff.  She is in the safest place she can be and you and the rest of the family desperately need a break.
toothfairy

Avatar / Picture

Caregiver
Registered:
Posts: 1,318
Reply with quote  #53 
Oh Hebrides,
Please have a nice time in beautiful Florence.
Your Real D would want you to, and I so hope that you get some R and R.
It is good role modelling to her that you are going, and that there is a life outside this horrific illness.
 Heb, you will get her through this, take a break now, and re-frame when you are back.
Love to you. x

__________________
Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) ,  Now Phase  2 , making progress every day. Living life to the full like a normal teen. We are not out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT.
Hebrides

Avatar / Picture

Caregiver
Registered:
Posts: 190
Reply with quote  #54 
Thank you so much, Toothfairy, mjkz & Izzo. Apart from storm Doris threatening to disrupt our flights (fingers crossed), i am actually now beginning to look forward to our trip, despite our circumstances. I've been up to visit d this evening and while she was in a bad way to start with, by the time I left she was at least talking a bit and not hiding her face in her hands. I know she is well cared for and I absolutely agree about modelling "normal" life to someone who now can barely remember her life before anorexia and depression took it away.

xx


__________________
Mum to 17 year old daughter with AN,1 year IP from Feb 2015, discharged Feb 2016, WR but mentally nowhere near where she needs to be. Remained stable but rapid weight loss again leading to admission to specialist ED unit Sept 2016. Back round the circle...
Hebrides

Avatar / Picture

Caregiver
Registered:
Posts: 190
Reply with quote  #55 

We are not in Florence. We are home – flight was cancelled, as were all flights to Florence via Amsterdam for the rest of yesterday, so after a fair bit of hanging around and hoping, we decided it wasn’t worth rebooking to fly today and only really having a day and a half there. Will get there one day, though goodness knows when.

As if that wasn’t enough, I had a call from d's unit while in the departure lounge to say a PICU bed had been found and d would be transferred immediately by secure ambulance, but without a member of staff accompanying her. Bizarre feeling, sitting surrounded by happy people setting off on their hols, having a meal together etc, while I'm in tears trying to get my head round a rather large crisis... There was no possibility of holding the bed till Monday, so I had no choice but to agree, knowing d would be distraught and terrified – especially since the bed is at the same hospital as 1st admission back in 2015 (not good experience) but obviously on a different ward (PICU). So in the end, it was probably good that our flight was cancelled, as it took the decision away from us and we were at least able to be at the unit for when she arrived – looking so, so scared and traumatised. Ugh ugh ugh.

We will head back there today, though are only allowed to visit for a couple of hours. Our CAMHS family therapist was a star yesterday – I left her a message just before we were called to the gate and she managed to speak to d before she left the unit in the morning and after we had left her at the new place yesterday afternoon. She is also planning to come to the PICU this afternoon so we will have some overlap time with her there too – a familiar voice and face for d in the midst of a pretty scary day.

I know that d ate nothing after she left the unit at 12 yesterday (ambulance staff: Just let us know when you want your lunch/Would you like a kit kat), and so far hasn't had anything today. Spoke to a nurse briefly who said they would try to support d and not give her the option of not eating, but I guess we are up against the downside of no longer being in a specialist ED unit with very clear protocols around mealtimes and what happens if there is non-compliance. Will try to talk with staff this afternoon, and try to summon up some energy from somewhere to gather some info (MARSIPAN etc etc) over the next few days to pass on to the unit. I can contact the ED unit psychiatrist on Monday and ask her advice too. While d is not at a critically low weight, she is still only 80% and we have plenty of experience of medical consequences of starvation for 24/48 hours at any weight. Up until yesterday breakfast she has been fully compliant with taking all diet orally for a couple of months, and it's pretty damn hard to see AN profiting from the very first opportunity to not eat, though of course it's no surprise. 

So, there you have it. Now to the business of sorting out refund, claiming on insurance etc and sorting out the vast amount of d’s stuff that had accumulated in the north East and is not permitted on the PICU ward (including pencils, wired bras and pants with elastic that can be removed....). Deep breaths and carry on – because there is no other way.

I'm crying as I write and sobbed as I unpacked her bags this morning - and I know all you wonderful people here will understand.

xx



__________________
Mum to 17 year old daughter with AN,1 year IP from Feb 2015, discharged Feb 2016, WR but mentally nowhere near where she needs to be. Remained stable but rapid weight loss again leading to admission to specialist ED unit Sept 2016. Back round the circle...
mjkz

Avatar / Picture

Caregiver
Registered:
Posts: 771
Reply with quote  #56 
Heb, I'm so sorry.  You will get there one day and in a way I wonder if you would have been able to enjoy it after the call about your daughter being transferred.  Maybe this is life's way of saying you have something waiting for you in the future for a longer vacation and maybe with daughter too.

Either way it is so unfair.
K63

Caregiver
Registered:
Posts: 809
Reply with quote  #57 
Hi Hebrides, heartbreaking to read your post i doubt if you would have in any way been able to enjoy break with your d being moved , sometimes things happen for a reason if we only knew the reason it may help.What type unit is she in now. Hopefully this will be a good safe place for her to recover in. Thinking of you hope you can get a few hours break for a coffee with a friend or a walk.
__________________
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. 
Torie

Avatar / Picture

Caregiver
Registered:
Posts: 3,996
Reply with quote  #58 
Oh no - instead of a little vacation, you get a ratcheting up of life challenges?  So so so unfair.  If there were any justice in the world, you would not be called upon to do this right now.  

Please remember that it does get better (when it's done with the getting worse part).

Sending strength and hugs (and a basketful of gold stars for all you do), 

-Torie

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

Caregiver
Registered:
Posts: 69
Reply with quote  #59 
Hebrides, when I was told that my D had to go to a PICU/HDU I was devastated, but I was told that my D might need the extra support that these facilities offer in order for her to recover quicker. All you need is something in place to make sure that she eats and I think you might get a sense of relief that you no longer have to face conversations from units saying that your D needs a higher level of care because she has it now and things can only get better. I feel for you about the holiday but as others have said it wouldn't have been great going on holiday and your D being transferred. My heart reaches out to you. 

Izzo xx
toothfairy

Avatar / Picture

Caregiver
Registered:
Posts: 1,318
Reply with quote  #60 
Hebrides,
I read this earlier, I am so sorry.
I just cannot imagine how more than exhausted you are.
Yep- if weather delays hadnt happened, I suspect that if you had got there, after getting the call that you would either grab a flight home or want to.
I hope she settles & they get the nutrition sorted immediately.
So sorry - you cannot get a moments peace right now.
I really get the bizarre airport scene.
Thinking of you,
Onward & upward, best of luck - I hope she turns a corner to recovery very soon in this unit.
Gutted for you.
Xxxx

__________________
Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) ,  Now Phase  2 , making progress every day. Living life to the full like a normal teen. We are not out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT.
Hebrides

Avatar / Picture

Caregiver
Registered:
Posts: 190
Reply with quote  #61 
Thank you all so much - I know there is always solidarity to be found here. 

K63 - it's a young people's Psychiatric Intensive Care Unit (PICU) - very high staff-patient ratio (so they can have 2-1 for all patients at once, if necessary), very secure (metal doors, airlocks etc), very restricted in terms of what's allowed on the ward etc, so opportunities for ligatures is very limited - although she's been using her hair recently, and finger nails have been pretty effective in the past.

Our visit on Saturday evening was not good - d was v withdrawn, lots of ED talk in a way we've not had for a while (not surprising after 48 hours no intake) - nurse said she had eaten "something" at lunch and they are trying to give her mealtime support but he admitted they were not used to seeing cases with such severe AN plus SH, depression, anxiety, suicidal ideation etc etc. Should try coming to the forum.... We ended up leaving after an hour as she persisted in saying no one cares, we don't care (yeah, right), everyone just wants her in hospital forever, she's fine etc etc - all the usual ED stuff. At one point she left the visitors' room and lurked by the door out of the ward, with staff trying to support her and get her either back to visit or back to ward. She wouldn't say goodbye and was eventually led back to the ward, and we left feeling pretty distraught. I'm heading back for this evening's visit on my own; who knows how she'll be with me today, but I'll take my book.


I don't mind about missing the few days' away, and you're all right - we probably would have come straight back, or not been able to enjoy it had we stayed. There will be another time. I do mind about feeling we are taking so many backwards steps atm and absolutely nothing forwards...but I guess it's early days in the new unit. I just hate d having to start over yet again, when she had such good relationships with staff in the previous place, and struggle to understand why she is so unable to stand up to her illness in any way at all, even when she knows what the consequences of her actions will be. Can't begin to imagine what it's like in her head. [bawl][bawl]

xx







__________________
Mum to 17 year old daughter with AN,1 year IP from Feb 2015, discharged Feb 2016, WR but mentally nowhere near where she needs to be. Remained stable but rapid weight loss again leading to admission to specialist ED unit Sept 2016. Back round the circle...
catbells

Caregiver
Registered:
Posts: 131
Reply with quote  #62 
Hi Hebrides - just when you think life has nothing left to throw at you. Hell.
I don't have anything constructive to say except I feel your pain. Nobody can understand except another parent the nightmare this illness is.
Thank goodness we have the support of this forum and the wise words of many who have been but mainly still going through, this emotional journey to what seems like hell at times. As you say it is worse for our poor kids.
Thinking of you and if you have to read your book - I hope you can switch off for a bit.
Maybe we should start an online book club! Anything ED related is banned...
Hugs xx

__________________
Mum to 16y/o D living in England. RAN since Sept 2015. Refed at home but after getting within 3kg of WR D relapsed July 2016. hospital twice for 2 and then 5 weeks. Now IP since Sept 2016
Izzo

Caregiver
Registered:
Posts: 69
Reply with quote  #63 
Thinking of you Hebrides. The extra support does seem to help considerably in terms of my D feeling more contained. I think your D will start to get herself back even though it will be rocky initially. Although my D seems to spend half the time in a dreadful state, the other half of the time she seems relatively calm and I think that is helped by the extra support from the staff in her unit as there are more of them around. 

Torie

Avatar / Picture

Caregiver
Registered:
Posts: 3,996
Reply with quote  #64 
Sending positive thoughts your way, Hebrides.  As SoTired says, this too shall pass.

Hang in there. xx

-Torie

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

Avatar / Picture

Caregiver
Registered:
Posts: 1,318
Reply with quote  #65 
Good luck this week Heb,
Please do something nice for yourself x

__________________
Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) ,  Now Phase  2 , making progress every day. Living life to the full like a normal teen. We are not out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT.
toothfairy

Avatar / Picture

Caregiver
Registered:
Posts: 1,318
Reply with quote  #66 
Heb,
How are you?
Thinking of you

__________________
Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) ,  Now Phase  2 , making progress every day. Living life to the full like a normal teen. We are not out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT.
Hebrides

Avatar / Picture

Caregiver
Registered:
Posts: 190
Reply with quote  #67 
Hi everyone - and thanks for asking, TF. Not sure how we have got through the past couple of weeks, but we have - just. It feels like we have taken several giant steps backwards - d is only accepting ng feeds now, so nothing orally, though accepting isn't the right word as she is resisting and needing to be restrained. it sounds like the anxiety beforehand is huge and the guilt afterwards even huger. Staff are trying hard to make sure she has extra support after feeds. Apparently she is refusing to go anywhere near real food, saying she is scared that smelling it will make her gain weight... On the more positive side, both CBT and family therapists have met with her and reported she was able to talk quite openly with them. The initial planning meeting a week ago was attended by both our CAMHS psychiatrist and the wonderful psychiatrist from the previous unit (by phone), so at least there was an exchange of information and contact details - we all agreed it is important that previous work is not lost and there can be some level of continuity. The new psychiatrist said they would review d in a week and felt she may be better on the acute ward on site if the ED appears to be the most pressing need - but not heard anything since then, so need to follow up. 

We visited (or at least, tried to) last Saturday, but d was very upset after morning feed and would not come in to visiting room. She was crying in the lobby outside it, so I went out and tried to touch her (shrank away) and said "I know it is so hard for you..." at which point she shouted "you don't have a clue" and demanded to be let back on the ward... After several staff attempts to get her to the visit, we called it a day and left, both feeling pretty glum. I am setting off on a few minutes to visit this evening, so I hope at least she will see me...

As if all that wasn't enough, I was told at the beginning of the week that d had assaulted a member of staff while trying to abscond, grabbed keys, stabbed staff with them, police were informed etc etc. I was distraught....until the next day when I got another call apologising - it was another patient, not my d.... Could have done without that extra dose of stress. Thankfully we are pretty sure d is not aware of the mix up, but we are still reeling.

Must get on my way.

xx

__________________
Mum to 17 year old daughter with AN,1 year IP from Feb 2015, discharged Feb 2016, WR but mentally nowhere near where she needs to be. Remained stable but rapid weight loss again leading to admission to specialist ED unit Sept 2016. Back round the circle...
toothfairy

Avatar / Picture

Caregiver
Registered:
Posts: 1,318
Reply with quote  #68 
OH MY GOSH Heb,
So sorry for the continued absolute nightmare.
Good luck at the visit later.
xxxx hugs

__________________
Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) ,  Now Phase  2 , making progress every day. Living life to the full like a normal teen. We are not out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT.
Izzo

Caregiver
Registered:
Posts: 69
Reply with quote  #69 
Hi Hebrides, is it worth you calling first or getting the staff to find out your D's views on visits? It just might save you the pain of visiting her when she can't face you. I've just been informed that my D has told staff that she doesn't want to see me while she's struggling... (along with the unit not recommending it). I think I might represent pressure for her to be well. 

Thank god it was another patient regarding that incident - I'm still reeling from what my D did and it wasn't on that scale so can't imagine what you felt when they called you to tell you about the assault + keys and absconsion.

Regarding the feeds this is another phase along the road but it sounds like the treating team are working together and that's positive. 

It's so tough when this miserable road that they are on seems never ending. 

Big hug back
xx


Torie

Avatar / Picture

Caregiver
Registered:
Posts: 3,996
Reply with quote  #70 
Oh dang, what a week.  Sure hope your visit goes OK.  

Please remember that we're with you in spirit. xx

-Torie

__________________
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
K63

Caregiver
Registered:
Posts: 809
Reply with quote  #71 
Hi Hebrides, this is so awful for you going through this right now. But nutrition is going in and with nutrition and time your d s brain will heal. It's so hard watching this and the guilt feeling is normal for them. Could you ask your d what can you do to help would she like to play a board game or paint or just sit and you read when you visit.
__________________
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. 
mjkz

Avatar / Picture

Caregiver
Registered:
Posts: 771
Reply with quote  #72 
Quote:
It feels like we have taken several giant steps backwards -


Not surprising that she has gone backwards with the huge changes she has experienced in being moved, etc. but I know that doesn't make it any easier.  If you do call to see if she wants visitors, make sure the staff let her know that you are calling even if she says she doesn't want to see you.  I just wish she had been able to get it together enough to avoid being moved but hopefully she will settle in and move forward again.
Hebrides

Avatar / Picture

Caregiver
Registered:
Posts: 190
Reply with quote  #73 


Quote:
 I just wish she had been able to get it together enough to avoid being moved but hopefully she will settle in and move forward again.


You and me both, mjkz...

Mon night's visit wasn't a great success. It took 45 mins for them to bring her to the visiting room because when I arrived they hadn't done her feed... When she did appear, she was upset and quiet (post-feed is always rubbish, obviously), but gradually started talking, which was pretty much just a litany of moans about how staff were "messing her about", not giving support after feeds as agreed, showed me bruises on her arms and legs from being restrained (because she is resisting at feed times), they had said would do an ECG twice a week but not had one for 10 days etc etc. I listened. I suggested we had a chat with the ward manager, which we did - who said there had been discussions with the doctors and they were planning to refer d to an acute ward as they feel she could manage outside the PICU. I expressed concern that the most local generic acute ward to us had refused to take d 3 weeks ago because of the high level of risk, and I don't feel anything has changed in that period, so doubt they would take her now, and don't think it's the right place for her. I know the geography of the place and know she would be at risk of absconsion. Through this conversation, d was getting more & more agitated and the ED voice was in full flow: no one cares, I don't want to fight anorexia, I don't want to recover, home is the only place I will feel better and you don't care because you don't want me at home... Her parting shot was "my goal is to be 20kg"...That was the end of the visit.

This evening I have spoken again with the ward manager, who has reiterated the plan to refer d, but agrees the more local unit would not be appropriate. Their plan is to refer to the acute ward in the same hospital as the PICU, which is as secure as the PICU but has more expertise with EDs. There would be the advantage of continuity of therapists, and of the PICU still on site if it was needed. I'm still a little unsure of why they think d would manage there insofar as she is still tying ligatures with her hair etc and none of the risky behaviours have abated since her admission - they seem to be getting worse. I suspect they are feeling out of their depth with the severity of her ED... But I was reassured they are excluding the local unit. I vainly hoped d might find this acceptable, and the clarification would help reduce the uncertainty and anxiety a little. Staff from the acute ward are due to talk to d tomorrow.

A few minutes after this call, d rang, so I had a 45 minute rant about why had I agreed to let them refer her to the acute ward, I needed to tell them if she goes there she will be straight back to the PICU because she won't manage there, there has been no post-feed support today, despite promises there would be, staff have walked past her on the corridor when she has been tying a ligature with her hair or banging her head (that's a new one for us) and not said anything - proof that no one cares. I listened. Again. Part of me feels at the moment she needs us to listen and hear her, to be on her side, to fight her corner rather than criticise her or tell her what she needs to do differently - but how to do this without colluding with the AN is such a challenge. When I told her there is always hope, even at the darkest times, she shouted "No there isn't" and put the phone down. My real d seems intent on making herself pretty invisible at the moment. And I was so looking forward to an evening of TV and knitting!! 

I guess I can talk to the ward again in the morning...

xx



__________________
Mum to 17 year old daughter with AN,1 year IP from Feb 2015, discharged Feb 2016, WR but mentally nowhere near where she needs to be. Remained stable but rapid weight loss again leading to admission to specialist ED unit Sept 2016. Back round the circle...
Izzo

Caregiver
Registered:
Posts: 69
Reply with quote  #74 
Hi Hebrides, 

This uncertainty about where your D is going must be so difficult. I really don't understand why psychiatric units haven't cottoned on to the fact that one can have severe psychiatric symptoms that go along with the ED and both must be treated (well) at the same time.

I really hope your D turns a corner soon and I know how hard it is being in the same situation myself - I am so glad you expressed that about fighting her corner without colluding with the AN - I know exactly what that's like. I always get an uncomfortable feeling when I realise that I have a accidentally colluded with the illness. 

What medication is your D on ? Is she taking it? 

Thinking of you and big hugs going your way

xxx
mjkz

Avatar / Picture

Caregiver
Registered:
Posts: 771
Reply with quote  #75 
Heb, it sounds like things are really hard right now.  I know you feel you need to listen and support her but I wonder if you started pointing out that you have no control over what they do. The only person who can really show them what is needed is your daughter.  You would love to have her home and have her feel better but she has to do the work to get there and only she can do it.  I found that listening to ED rants only made things worse and when I started pointing out to my daughter that she and she alone had control over what happened to her, then she started feeling more empowered to try to make things happen.  At the end of the day, you can talk to the ward staff but they will do what they need to based on what they are seeing.
Previous Topic | Next Topic
Print
Reply

Quick Navigation:

F.E.A.S.T. Families Empowered and Supporting Treatment of Eating Disorders
is a 501(c)3 charitable organization committed to maintaining the Around the Dinner Table forum as a FREE service for any caregiver of a loved-one with an eating disorder.

P.O. Box 1281 | Warrenton, VA 20188 USA

US +1 855-50-FEAST | Canada +1 647-247-1339 | Australia +61 731886675 | UK +443308280031 

This forum is sponsored by F.E.A.S.T., an organization of parents serving parents and caregivers of patients of all ages with anorexia, bulimia, and other eating disorders. Information and advice given on this forum does not necessarily represent the policy or opinion of F.E.A.S.T. or its volunteers and is meant to support, not replace, professional consultation.

F.E.A.S.T. is registered as a nonprofit organization under section 501(c)(3) of the United States Internal Revenue Code.

Terms of Use | Privacy Policy | Community Rules | Forum Rules | F.E.A.S.T. Principles | YMadmin | WTadmin
Custom Search of F.E.A.S.T. and Forum Content: