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
