A New Decade

I began this blog in 2011.  At the time our beautiful daughter, Julie -  then aged 15 - had been locked in a mental hospital for 9 months.  We were heart-broken and exhausted.  At the time we didn't know anybody else in a situation remotely like ours.

Ten years ago medical people often reassured us that the condition would burn itself out, but it never did.  Now a decade has passed and we still don't know where this journey, begun when Julie was very young, will end.

Over the years she has had several diagnoses.  At the moment she has two, possibly three, concurrent diagnostic labels.  I have lost count of the number of drugs she has been prescribed.  She has cycled round the different anti-depressants, anti-psychotics and mood-stabilisers in various dosages and combinations.  We have seen fashions in prescribing come and go.  Never a year has gone past without visits to Julie on hospital wards.  It is impossible now to say what Julie would be like as a person without these drugs and interventions.  She has spent much of her adolescence and young adulthood under their influence.

Do I think medical science will find an answer for Julie or people like her?  If I'm perfectly honest, having had such a prolonged and uncomfortable close-up window onto the reality of severe mental illness, I don't think medical science in it's current state can solve the problem.  It has barely progressed from the nineteenth century.  I don't see much evidence that the current list of possible diagnoses is much more stable than the range of hysterias diagnosed then.  The currently available drugs are much kinder than their predecessors but prescribing them is still a lottery.  They don't work for most people, and when they do work it's not always clear that it wasn't just luck, time, and good old sedation.  There has been real progress made in therapies like CBT, but they require a lot of effort and insight from patients, and don't (usually) improve the situation of those with more severe mental illness.  I think it's going to need something quite new, perhaps from fields like genetics, to shake up the whole field of mental illness and produce new ways of describing, categorising, dealing with and resolving mental distress and confusion.

But though we enter the second decade with Julie as unwell as ever - indeed, many of her symptoms have only grown more extreme over time - and though I don't expect that this decade will see some new miracle cure, still the situation feels much less bleak than it did when I began the blog.  Most of this is simply down to experience.  We have certainly survived some very challenging moments!  But the family hasn't fallen apart, we still have good times and we know how to deal with the bad.  It's not ideal, but whose life is?  As I've grown more confident talking (and writing) about Julie's situation, I've met the same response over and over again - other people confiding their stories about their own situations, their own hard times.  Who said life had to be easy?

Taking It Slowly

It takes a while.  You have been away, you come back. You imagined it would all be easy once you were back home.  But it's not. It's strange, and hard.  Despite everything, some bit of you misses what you have just left behind.

Julie leaves hospital.  We do our best to rally round, but it's hard.  Her evenings alone feel long and empty.  She wanted her own front door for so long, but now her refuge feels a bit like a prison.

It takes a while, I say.  It always takes a while to adjust.  You have to find little things to latch onto, tiny bursts of pleasure.  It's like trying to light a fire: lots of false starts, lots of wasted matches, until you finally get it to settle down, before the logs finally catch and then begin to glow with a constant light.

Institutionalisation

Julie is now thoroughly institutionalised.  As the weeks pass, her interest in the world outside the closed world of the ward gradually diminishes.  When Joe and I visit she seems sleepy, bored, and sometimes asks us to leave early.  She only wants to talk about the hospital - about the small excitements and struggles of that little world.

I am asked to come into the hospital by the staff.  I have to arrange time off work which is difficult. I drive over expecting some new information or perhaps a plan, but when I arrive nobody seems quite sure why I am there.   'Did you want to ask us anything in particular?' asks the psychiatrist, looking puzzled.  There is a drowsy lack of urgency.  A couple of weeks ago there was talk about a discharge, but since then Julie has got upset whenever she leaves the ward so they have abandoned this idea.  I gently suggest that she may need help and encouragement to get over these setbacks.  'Yes,' they sigh, as if I had said that it would be nice if we were all on a beach in the Bahamas, instead of stuck in a meeting room in a mental hospital with the rain pouring down outside.

The staff seem just as institutionalised as she does: they show no interest in her former life outside hospital.  I wonder if they even realise that Julie has an existence outside their care: a life, a flat, a job, friends, family.  They have no contact with the people who normally work with her when she is outside their door, and in turn these community teams never visit their charges once they vanish into hospital.  No one makes any attempt to bridge the two worlds.

After this conversation, Julie is brought in to join us.  She is in her element - laughing and joking with the staff.  'How are you?' the psychiatrist asks her considerately.  It occurs to me that Julie is really very happy on the ward.  It has everything she needs: companionship, compassion, acceptance.  She spent so much of her teenage years in these places that she hardly notices minor nuisances like the lack of freedom.  This is her village, and she feels she belongs there.  How are they ever going to get her to leave?

Keeping Things Going

Julie is still in hospital.  It is impossible to tell what is going on - whether she is getting better or not.  Messages are conflicting.  One day we are told she will be on the ward for a long time, the next day we hear she is about to be discharged.  Her own accounts (and mood) also swing about wildly.

In the midst of this I am trying to hang onto the reins of her "normal" life: her job, her flat, her finances.  I want them to be still there when she is ready to take them up again.  But it is far from easy.  Employers, understandably, would like to know what to expect from week to week.  If I relay the worst of the predictions to them they may start the process of ending her contract.  At the same time, you don't want to give the impression that everything's rosy and she should be back at work.  I have to be cautious what I say.

I phoned the ACAS helpline for advice about her employment (this is a government service).  I explained my daughter was sick and I needed to know what she could expect from her employer.  They were very sympathetic - gave me a long list of employee rights - until I mentioned sectioning.  There was a pause, and then the conversation changed abruptly. They started explaining how, if you go to prison, your employer can terminate your contract.  "Yes", I said, "but that's if you go to prison.  Going back to being sick - if she had been hit by a bus for example..." But I had lost them at sectioning.  One deprivation of liberty is as good as another it seems.  A bit depressing really.

Talking about Mental Illness

Is it getting any easier to talk about mental illness?

It's getting easier to talk about depression.  Last month, when Julie was depressed, it was possible to mention this without worrying too much how it would be received.  In general people were quite sympathetic and didn't shy away from the subject.  I heard quite a lot of other people's stories about themselves or family members or friends who had been depressed, sometimes to the point of having to go into hospital, as Julie had done.

It isn't so easy to talk about mania.  This month, when Julie is manic, I have to be more cautious about what I say.  I have noticed this in past.  For example, when I went to Mental Health First Aid training at work people began to look queasy as we reached the section on psychosis.  When Julie was younger I once accidentally used the word "psychotic" in describing our desperate situation to a friend - his face and voice suddenly changed, shock and disgust flitting across his features.  I learned to be more careful.

So it seems that Julie has an illness that is half way acceptable.  It is alright to talk about the depression, but not the mania.  Depression is the most common mental illness.  People sometimes talk as if it is the only mental illness; as if all mental illness could be solved with prozac and CBT and more understanding.  I have even heard mental health providers talk in this way.  It glosses over the inconvenient truth that there are people who have other mental illnesses that are still not talked about.

Hospital Time

There's time, and there's hospital time.

Or rather, mental hospital time.  You don't get to hang around most modern hospitals like you did in the past - no weeks flat on your back being waited on by nurses.  These days you're lucky to get an overnight stay after your heart transplant operation.

Except in mental hospitals.  The land that time forgot.

Julie's currently on the 3-day assessment ward.  The local mental hospital operates a 3-3-3 system: one ward for 3-day assessments for easy and urgent cases, one for 3-week stays if treatment is needed, the last ward for 3-month stays for longer interventions.  It looks good on paper.  The staff always solemnly tell you that you'll be on their ward for 3 days, weeks or months when you roll through the doors.  At first you believe them, comforted by the order and regularity of such a system after the chaos of mental illness.

Well Julie's been on the 3-day ward for 2 weeks so far.  She never stays less than a month.  When she was 14, we took her into the adolescent ward for a 3-week assessment, and she came out 1 year later.

Outside, life goes on.  Julie's employer has to hire temporary cover.  Bills land on her doormat.  Her electricity meter keeps on ticking.  Her plants keep on growing and demanding water.  Things grow on the washing up that was left in her sink.  The government keeps a clock: after a certain period of time in hospital they stop paying certain benefits.

Inside, time drifts by.  Julie sleeps and eats and reads books.  These things take time.

Absences

Julie’s episodes of illness are like absences. To people who work or live beside her, they literally are absences - she disappears into the hospital. To those who know her, they are like absences from herself.

Most of the time these days Julie is very much present. She has a flat of her own, a job, hobbies. She is warm, funny, kind, rather lonely, rather anxious. She has her contradictions of course - simultaneously organised and messy for example - just like the rest of us. Joe and I enjoy our grown-up daughter. Sometimes we go to her flat for Sunday lunch (which we know requires her to mount a huge cleanup operation beforehand). Julie and I are particularly close: sometimes we arrange to watch the same show on television in the evening, each in our separate armchairs in our separate living rooms, and we text each other furiously like teenagers, making observations and jokes.

During an episode of illness this all completely vanishes. Julie hardly speaks, except to express a desire to kill herself, which is a kind of magic incantation which opens the doors to the hospital. If we’re lucky, it will be the local hospital. The onset of illness is startling: people who work closely with Julie - therapists or support workers - often express shock at the lack of warning. There is no preparation, except sometimes a very subtle dreaminess, a stock quality to some of her answers, as if she were tired. She still makes plans and appointments until the very last minute, and afterwards of course they have to be unmade by other people, usually me.

The onset itself is very dramatic - very florid - emergency police calls, chases around town. One night last week I had to call out the police twice - she had absconded from A&E where they had safely deposited her. Both passers-by and police were extraordinarily kind, both times. Complete strangers and police officers spent long stretches of time sitting on the pavement with Julie in the middle of the night, patiently persuading her to return to hospital. They saw - a young woman, blank of expression, sitting limply on the pavement like a rag doll, repeating only that she wanted to die. They didn’t see the Julie most other people know.  Her work colleagues and friends would not have recognised her.

She does not acknowledge me, sitting beside her on the pavement, clutching a warmed up carton of Mac and cheese that I had hoped would give her much needed sustenance. Eventually she will eat it, in a zombie-like trance. There is no response at all when I try to initiate our ordinary chatter - no flicker of recognition. I miss her.