Tuesday, 8 July 2014

Caring – always there, always responsible – often ignored



I make no excuses for telling the “other side of the story” about caring for a loved one with an eating disorder in this post – it is tough, it is relentless, it is frustrating.....

A couple of years ago my daughter was going through an even more difficult time than normal.  She had come back home from university, was struggling to find her “niche” with work – for that read jobless, having to live with Mum and Step-Dad (horrors of horrors) and to top it all her brother was also at home and had just started a great new job.  From her point of view – it “sucked”.  Hardly surprising then that the anorexia took even more of a hold – for some anorexics (and I also speak from my own personal experience here) – anorexia can be about control; when your life feels out of the control from how you would like it to be, one of the things that you can take control of is your food intake.  It feels empowering...

Things were tough at home.  My daughter was very ill – of course, she was completely oblivious to this! We were all concerned.  Around this time we started family therapy at our local eating disorder unit – about 45 minutes drive away.  My daughter only attended a couple of times – she didn't see the need – after all there was nothing wrong with her.  My husband nobly used up loads of holiday taking regular half days off work, my son juggled his work getting up early to work before the appointments, taking laptop in the car to work en route, staying late to work to make up for lost time etc.  As a family we were showing to my daughter’s team that we cared, we were there for her and we were coming to family therapy to help her – whether or not she came too.  Surely that was a clear message to her team that we were involved?  That we cared?

I was due to have a hysterectomy around this time – I was very worried about my daughter – but my son and husband insisted that I went through with it – I had already postponed it from a few months earlier due to being worried about my daughter.  The organisation that went on!  Plans to make sure that she stayed in contact with my son and husband during the day whilst they were at work, plans for them to meet her for lunch, coffee during the day to ensure that some kind of food went inside her, what to cook for her in the evening.  The night before the op I was up until the early hours of the morning writing to various members of her team in a desperate attempt to get my voice heard as to how ill she was and how hard it was at home.  On the way to the hospital letters were pushed through doors – well – it took my mind off the op!  The whole time I was in hospital I was worried about her: had she gone to the gym, had she collapsed in the street... my mobile was on permanently just in case someone needed me. You don't relinquish caring responsibilities simply because you are ill yourself - it doesn't work that way. It wasn't exactly a relaxing convalescence. 

At the time my daughter was being seen by the GP she also had an appointment scheduled as an outpatient at the eating disorder unit.  This was just a day after I came out of hospital.  My husband took her and not once and I mean not once was he asked how he felt she was doing or how we were coping as a family.  He was merely the taxi driver. He was ignored.

Clearly she wasn't well as just after this and within a 10 day period we had three sectioning teams turn up on the doorstep.  The last team did actually speak to me (Hooray!) whilst my daughter was upstairs and listened, albeit briefly, to my concerns.  My daughter knew the system – a sectioning team in our lounge was becoming almost commonplace to her – she knew what answers they were looking for, she appeared calm and with an insight into her illness.  It is so difficult as a carer to get the message across to a medical team that of course she will tell them what they want to hear for her not to be sectioned – she is practised at it, she is anorexic – she will lie, she will be deceitful.  This time though the team (I think they were getting fed-up of coming to our house!) wanted her to go into the eating disorder unit – she wasn't having it and it got to the stage where her “rights” were read out under the Mental Health Act before she caved in and said she would go voluntarily – knowing full well that if she did this she could discharge herself.  One of the people on the team was great – she stayed here whilst my daughter spent hours packing, escorted her to the unit with us following and waited until with her until she was admitted.  By now it was late at night and we were all exhausted.  My daughter hadn't eaten all day and despite being an EDU it was out of normal eating hours and difficult to get her anything at all to eat!  There we were - still caring for her despite her being in an inpatient unit!

You might think that our caring responsibility then ended – no, that’s not how it works!  Yes – we were relieved that she was being looked after, that her bloods were being checked, that someone would be keeping an eye on her, that she wouldn't be going to the gym, that she would actually eat.  That was the good bit...  Then there were the numerous texts... “you have to get me out of here”, “being in a unit doesn’t work for me”, “to get better I need to have a ‘life’ not be in here”, “if you love me you will get me out of here”, “I will do better now”, “this has been a shock, I understand I am ill now”.  It sounds harsh – but she had been in an EDU before and despite the “it’s different this time” we all knew that as soon as she came out she would go back to her previous (and by now very dangerous) anorexic ways.  Shopping lists were texted every day – I was still recovering from the hysterectomy and couldn't drive so every day I would walk to the shops to get the new items on the list, every evening my husband and I would go over to the unit for a visit.  There we were met by a positively charming person, my daughter, the same daughter who had been so difficult, so rude, so hard to live with – it was all a charm offensive to get us on her side.  The visits were not easy – we knew she was trying to pull the wool over our eyes.  We also knew that she would be a model in-patient – eating everything that would be put in front of her without a fuss, saying what changes she would make in her life etc.  We had been there before.  I should perhaps add at this point that this was a different in-patient unit to the one she had been three times to before.  I phoned up the in-patient unit and left numerous messages asking them to contact me so that I could say it really was at home and to give them some information.  I was never contacted. 

My daughter produced a brilliantly written plan – she’s no fool – of how she now had insight into her illness, the plans she was making to ensure that she had support at home, (seeing a nutritionist, going to therapy, regular meal times, foods that would no longer be on the forbidden list, engaging with the community mental health team).  We, as a family, knew that this was absolute rubbish – we’d seen it all before .... 

Six days after she was admitted – yes, just six days...  during which we were still caring, going backwards and forwards with items she needed, visiting, trying to get listened to...   we had a family therapy meeting.  Myself, my husband and son all went to it (having made suitable arrangements with work), despite being in the building next door my daughter didn’t attend.  During the session we all picked up on the fact that it seemed to be that she might be discharged that afternoon.  Six days after a third visit from a sectioning team..??!!!  My son is laid back – so much so that as the saying goes – he’s almost horizontal, he’s chilled, he’s calm – well not this day.  I have never seen him so angry – there’s a fence just outside this building and I am surprised it is still standing – I thought he was going to knock it down with his bare hands.  Leaving out the expletives – of which there were many – he said that he couldn't understand how professionals in eating disorders could be so taken in by the words of an anorexic, that they shouldn’t be in their jobs, that they were worse than useless, that they hadn't even consulted with us..  We all agreed – what were they thinking of...

As soon as we got home I phoned up the in-patient unit – it was extremely difficult to get any information out of them.  This still is beyond my comprehension...  they were hiding behind “patient confidentiality”...  yet again!  It had been agreed that she could come home that day by the team looking after her. Had we been told about this? No.  Had we as carers been asked how we would cope? No.  Had we been asked how things were at home?  No.  Had we been asked how she coped after her previous admissions to another in-patient unit?  No. What was also frightening was that they intended to let her walk – with suitcases and bags – to the nearest station – over half an hour walk away  - in February.  A seriously underweight person with a lot of luggage – what were they thinking of!  I told them to please hold onto her until my husband could get there from work – I still couldn't drive.  They reluctantly said they would do this.  We only realised she was coming out because we had had a therapy session that morning and picked up on it there even though it wasn't explicitly expressed.  Family and carers are assumed to be there to “pick up the pieces” no matter what.

So there we were – having had six days of stressful texts, visits, trying to keep care in place – back to where we were before.  The 24 hour caring responsibility of a very ill person was firmly placed back with us – no consultation with us, no phone call, no offer of support and despite showing that we were clearly involved  – NOTHING.

The caring responsibility never ends...  


So - what is such a miserable, depressing and negative post doing on such a lovely positive site about recovery - doesn't quite fit does it?

I want things to change, I want medics to be aware of the reality of the situation, I want them to understand that they can listen to family and carers, I want people like my daughter who are in an environment where they could get help to get that help, I want to see that when there is a glimmer of light that someone wants to recover this opportunity is grabbed with both hands by the medics - I want to see more people on the road to recovery! I want to turn our negative experience into a positive one for others. So medics out there - please - we want positive stories not depressing ones like ours - let's change things for the better.

Ann
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