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Mood malady

People with bipolar disorder are not the only ones suffering. Their families are also finding themselves at their wits' end as they battle chaotic treatment and find themselves deliberately kept in the dark.

Lea Alderslade is bright, engaging, articulate. At 27 she's an accomplished actor, a promising artist, a poet. She's also been held in prison, smashed up her car three times and slit her wrists so badly she has needed surgery. She's been arrested, hospitalised, tranquillised, straitjacketed and had up for trespass.

At her parents' home in Christchurch, she makes herself another cup of coffee. "I would have loved to have been a journalist or a psychologist. I've written poetry and articles; my grades at university were As. But this came along and just crushed me."

Bipolar disorder. A mental illness typified by periods of mania and depression or an alternating combination called mixed mood states. A changeable, mercurial disorder usually beginning in teenage years, affecting an estimated 1.6% of the population. An illness first described by a Cappadocian philosopher between 30AD and 150AD. A malady that cuts a tumultuous path of mood swings and extreme behaviour.

Lea is not a criminal. She is unwell.

"If you look at a DVD of Lea as a child, she is the one in the front singing." Lea's mother, Miranda, has just come in from the garden at their north Canterbury bach. It's a small haven, perched high above the sea, out of cellphone range. She says Lea was "organising everyone, leading the charge - she pushed herself to succeed in everything. She was driven."

But in her third-form year "things started to collapse". Lea became depressive, needy, non-conforming. She had trouble maintaining relationships; peers found her overbearing. At 13, she crushed a light bulb in her hand. At 14, she cut her wrists. She was put on antidepressants and given counselling, but her mood swings continued to escalate. There were violent outbursts, more suicide attempts.

"One weekend was really bad," recalls Miranda. "Lea was 15. We had to get the police and take her into A&E. She was cutting her wrists, slashing herself. We had to put her in Sunnyside [Hospital - there was no separate facility for young people at the time]. I still remember walking away, hearing her screaming, but we had to keep her safe."

She was diagnosed with bipolar disorder (previously known as manic depressive disorder or psychosis) and borderline personality disorder, and put on a regime of antipsychotic medication under the care of her GP and outpatient facility Youth Specialty Services.

In the following years, however, her moods became more unstable. She was unresponsive to the standard medication for mania: lithium. She became anxious. She lost weight, became anorexic. At times of severe mania she would end up at Christchurch Hospital's Accident and Emergency Department - Christchurch is one of the few New Zealand cities that has no mobile crisis team - then moving on to Psychiatric Emergency Services, then home to an increasingly exhausted and bewildered family.

When Lea turned 18, says Miranda, the shutters went down. Lea left home, privacy laws enabled her to restrict family involvement, vital routines were swept aside. "She started to lose sight of taking her meds. Not going to appointments. We couldn't help her get there because we weren't told. We were cut out of the loop. People were scripting her all this medication, but we weren't privy to what treatment she was on.

"At the end of the day her boyfriend can pack up and go, but she'll always be our daughter. We're the ones who answer the phone late at night and smash through doors to get into her flat. We have overall responsibility because she is our daughter, but we aren't given the tools to work with. We are flying on one wing."

Social drinking turned to binge drinking - drug or alcohol-related problems are higher among people with bipolar dis­order than the general population. And a frenzied pattern of crisis management developed: ambulance, police, hospital emergency services, psychiatric emergency services, acute triage in hospital.

Her mother's exasperation is palpable. "It's always the same old response: 'Lea's got to take responsibility.' Hello? What part of 'she is sick' don't you understand? She's been on a huge list of medications and no one really finds out whether they work because she's been relied on in her unwell state to take responsibility for this huge amount of medication. We know sometimes Lea doesn't help herself - but Lea is sick."

Lea's is a familiar story, an erratic tilting between depression and mania, home and hospital, work and emergency services, a chaotic pathway supposed to manage a chaotic illness.

On the one side, acute de-escalation of symptoms in hospital.

"But people just sit there in their misery," says Lea. "There're no therapeutic programmes. They need to get an art therapist in there, writing classes, alcohol and drug education, physical exercise - things that get people motivated about life again. If they had the skills to fix themselves, they wouldn't be there, so why put them in a white room and expect that they will get all this insight? Unless they're people who need to be detained because their lives are at risk, it's totally counterproductive."

On the other side, a voluntary out­patients' service reliant on a level of ongoing self-management often at odds with bipolar disorder.

For 23-year-old Shelley Wright*, this system just has not worked. As a child she was bright, full-on, but "not so far out there that I was worried", says her mother, Marie*. Now, five years after she was diagnosed with bipolar, "I can't believe she's my daughter. She's loud, vain, she alienates people. She gets plastered, vandalises things, belts up people and gets in trouble with the police."

She is, says Marie, "textbook manic": buying clothes, not paying bills, not repaying bonds after she has trashed yet another flat.

"We've been to [Psychiatric Emergency Services] on and off since she was 18. She's on lithium and an anti-anxiety drug and an antidepressant, and medication to stop her getting her period because when she got her period she wanted to murder someone. She wouldn't turn up for appointments - when she did, she screamed at the doctors. Psych Emergency said they wouldn't take her back. Now, in the last fortnight, they've realised she has borderline personality disorder with bipolar crossover."

To begin a new treatment programme, she was taken off lithium and put on another medication. Then she failed to turn up to her next appointment. "Her drugs have been dropped and her behaviour is out of control. I'm so angry, so ­disappointed. They see her for a short time, then dump her."

Like Miranda, Marie is at her wits' end. Too many dashes into the city to rescue her daughter, too many late-night phone calls, too much abuse, too much worry and - that great parental hammering machine - too much guilt.

"Fear and guilt - it just beats you up day after day. But what can I do? They look at me and think something is wrong with me. No one says there are other parents going through this. No one has ever asked me how I am. Last year I went to the doctor - I couldn't stop crying. I was living on eggshells, couldn't sleep, couldn't eat, couldn't work. I've never been able to sit down with anyone and say all this.

"But in the end when she rings in the middle of the night I'll go and help her."

Marie has been this way before. When her son Alistair* began university, he became depressed, then anxious. Eventually he left university and moved into a sleepout on his parents' farm.

One morning, he didn't come down for breakfast. "I woke up with a horrible feeling in my stomach. I went up and the door was locked. I knocked and there was no answer. In your head you make up excuses - he's really tired, he's just sleeping really heavily.

"He was lying there and he was purple - just purple. He had taken an overdose."

He was diagnosed with bipolar and put on medication that controlled his depression but increased his anxiety. "I had no idea, I didn't understand any of it and there was no support for the parent. No one said, read this - this is what happens with bipolar."

Part of the difficulty is the nature of the illness itself. Although typified by extreme mood swings, it is a disorder in which the lines between illness and normality, mood and personality, are difficult to determine. It has been associated with creativity - Beethoven, Keats, Schumann and van Gogh are said to have had bipolar; British actor Stephen Fry is one of four million people in the UK with the disorder. In New Zealand, former NZ Idol judge and controversial radio DJ Iain Stables talked of his bipolar life in a 2008 article Listener article, and radio and TV personality Murray Deaker wrote in his 2004 book, Just an Opinion, about being diagnosed with bipolar. Yet the disorder runs an erratic path.

"Classic descriptions show people having manic times, then depressed, then back to normal," says professor of psychological medicine and University of Otago dean Peter Joyce. "But we are appreciating now that lots get back to normal only occasionally or only briefly or not at all. Or they have fluctuations, so they're not severely manic or severely depressed but sub-syndrome, so it's not like they are completely stable."

Bipolar is also notoriously difficult to diagnose. About two-thirds of people start off with another diagnosis, says Joyce - often depression if this is the first obvious symptom, schizophrenia if mania is the first indication of illness, or one of a number of different anxiety disorders if this is what is prompting the patient to seek treatment.

And there is no straightforward treatment. "You have different manifestations at different times and you have trial and error of different medications compounded by the person's view of what they will take regularly and what they won't. And while it's not working you have to live with all the consequences of what is going on. There may be 10-20% of people with bipolar disorder with years of trying different treatment combinations and we still struggle to find something that achieves that mood stability."

The human cost of uncontrolled mood instability is high. Suicide rates among people with bipolar are 15 times higher than in the general population. Incarceration is not uncommon - a 1999 study of psychiatric morbidity in New Zealand prisons found a significantly higher rate of mental disorder, particularly schizophrenia, bipolar and major depression, among inmates than in the community.

And in hospitals? "Twenty-five per cent of people in acute inpatient areas in psychiatric institutions have bipolar disorder," says University of Otago associate professor of psychological medicine Marie Crowe. "That's really high. That tells me something is going wrong and they are having to come in for acute care."

The guiding principle for the country's mental health system is one of recovery, based on the belief that people with mental illness and/or addictions should be able to make informed decisions that promote their mental health while also being able to access high-quality health services when necessary.

Those diagnosed with bipolar tend to be first seen by a GP before being referred to a secondary specialist service, which will carry out a further assessment and establish a medical regime. Once the mood is stabilised and the medication appears to be working well, they can then be referred back to their GP.

Yet the very nature of bipolar - the continuous swings, the stages of normality or near-normality - tends to work against this process. Patients can develop side effects to the medications, life events may trigger major episodes, a four-week appointment delay can lead to a complete manic or depressive episode.

Even on their medication, says Crowe, people can still have episodes.

"There are some things that are characteristic for bipolar but the course of everyone's illness is slightly different. There's no generic way of managing it. They say you have a genetic predisposition [an estimated 80% of bipolar cases are related to genes], but what triggers episodes is disruptions to social rhythms, non-adherence to medication and stressful life events. You have to know the individual's stressors, the things that trigger it for that person."

For many that trigger is broken sleep; for some it is interference with biological rhythms, such as international travel with time-zone changes or shift work that disrupts sleep patterns. Some react to seasonal changes - mania is believed to be more common in spring and summer, depression in winter.

"There used to be folklore at Hill­morton [Hospital]," says Joyce, "that the week after the first good nor'wester in spring you would have a rush of manic admissions. There's some evidence, but it is not consistent year by year or city by city."

Then there are those who don't take their medication. "And I can understand that," says Crowe. "If I was sold the idea that medication was going to work and it didn't, why would you have faith in it? And if you go through a stage where you are feeling okay, you think do I really need that medication?"

That "okay" stage could be the plateaued state of "normality" between episodes - although with bipolar, fluctuations are unavoidable - or it could be the initial phase of mania, a phase marked by high energy, confidence, feelings of grandiosity. Those early stages, says Joyce, are seductive: "If you're running at 120 or 150%, the idea of running at 95 isn't very attractive."

But it doesn't last. An initial elevation of mood can tip into extreme irritability and will inevitably escalate into full-blown mania.

Which is, says Lea, a nightmare. "Your mind is everywhere, you don't sleep, your body's exhausted, you're shaking, your heart's beating a million miles an hour. At the very end it gets catatonic - you can't move, you can't do anything. You're stuck with severe mania inside you and you can only sit there and wait it out. That's the worst."

Then comes the predictable crash into depression. For many the result is a revolving door between outpatient care with a GP or community mental health services and acute hospital care.

Mental Health Group director David Chaplow describes an integrated system allowing easy and quick access between the two sectors with an overall programme of care.

"In an ideal situation, if a person has come in for specialist assessment and treatment and they are being discharged back to a practitioner, they should have a comprehensive relapse-management plan. I'm not saying everyone gets this, but this is what should happen. In that relapse-prevention plan there are a number of things - the diagnosis, the medication, the time of discharge. There'll also be a profile of early warning signs and what to do when things go wrong, so a person with bipolar can get help rapidly when they need it. Waiting four weeks for an appointment is totally nonsense."

Yet none of the families spoken to for this article were party to a relapse-management plan, and an overstretched health sector makes the ongoing com­munication required for such a plan a near-impossible goal. As Chaplow admits, "The average district health board clinician is doing the dance between the person who is in crisis and the 10 other people who are in crisis. There is a reality here which, while not ideal, is a reality."

Such a plan also requires informed and ongoing support from a third party - a partner, friend or, most commonly, parent. But as teenagers enter adulthood, they can switch that support off.

There are circumstances, says Chaplow, when people might justifiably say under no circumstances should my parents know. "And you have to respect that, unless it is a safety issue."

And not all parents provide optimal management of bipolar, says Joyce. Some over-interpret every emotion as a sign of illness, and some are so laid-back they do not recognise signs of decline.

This in itself could be evidence of a health-care system that does not provide adequate support for those who answer the late-night calls, pay the bills, provide the necessary shelter in the shattered wake of mania or depression. But there is no denying that bipolar itself can lead to alienation from families, and that such alienation can further compound the ­disorder.

Increasingly the NGO sector is stepping in to provide that extra level of support. There are support groups and websites for people with bipolar; the Schizophrenia Fellowship (now Supporting Families) has extended its brief to help those with bipolar and other chronic mental illnesses.

In Whanganui, Frank Bristol is manager of Balance NZ, a charitable trust offering education and peer support programmes for people with bipolar and other mood disorders. He says talking to someone who lives with bipolar encourages better self-management skills and helps de­stigmatise the condition.

As he knows only too well. Bristol was 17 when he was diagnosed with manic depressive psychosis and admitted to Lake Alice Hospital, one of several in­patient mental institutions now long gone.

"Bipolar is a very significant diagnosis and one of the hardest to come to terms with. People underestimate the power of diagnosis and it can keep you trapped."

In recent years he has learnt how to manage his illness through a steady regime of daily meditation, regular exercise, adequate sleep and being mindful of where his thoughts are heading.

"If I am getting amped up and irritable, I need to put the genie back in the bottle. You have to be extra vigilant. I think of bipolar disorder as part of me but I like to think I can live my life in terms of what can help me and minimise things that can harm me."

Yet even programmes such as Balance do not ensure that people with bipolar will remain within the health system.

Joyce says what is required alongside short-term crisis management facilities is properly resourced mental health teams that will co-ordinate the needs of people with bipolar for a couple of years, to help them come to grips the disorder, to make sure appropriate medications are tried and to discourage inappropriate alcohol and drug use.

"Everyone should get a couple of years. If you get them pretty well, it doesn't take much to stay in touch and involved. If the treatment team is chopping and changing all the time and no one gets to see what's working and what's not working, then it multiplies the problems."

Crowe agrees - relying on an acute model of care alone is not going to work. She wants to see a specific bipolar disorder service providing long-term medical and psychosocial intervention (helping people manage their psychological state within a social environment) staffed by people with expertise in the field.

"One of the problems is that health services run on annual budgets, but for bipolar you need a long-term model. It's similar to diabetes. Diabetes recurs, it's ongoing and people with ­diabetes tend to have a long-term model of care - they are never discharged."

Crowe has been trialling an 18-month psychosocial programme for young people with bipolar involving weekly or twice weekly meetings and regular phone contact.

"All the research supports the need for medication and a structured psychosocial intervention. It is a chaotic disorder and it can wreak havoc but there are strategies and interventions that can help. One of the crucial elements is continuity of care."

Considering the cost of uncontrolled bipolar to society - the hospital and prison admissions, the ambulance and police services, the mayhem that can result from severe mania - such programmes are also cost-effective, she says. "In the short term it is cost-neutral. Over time you save money."

In the meantime, the toll continues - the out-of-control teenager going ballistic in the emergency department, the girl leglessly drunk in a city park, the young woman facing the havoc she caused the day before. Some, like Alistair Wright - who now has a stable relationship and job in London - and Frank Bristol, have achieved a rough balance in their lives, alert to the warning signs, contained on their respective medication.

"There are positive things about bi­polar," says Bristol. "When I'm in the right space I can have a lot of language- and thought-fluency as part of the cycle. But it's not a gift. It's still very much an illness. I don't get tired and it has given me a huge amount of energy at times, but sitting in a seclusion room in a mental institution with no clothes on and a bucket - that's not the best place to be."

Others, like Shelley, are in the grip of the worst excesses of the disorder. She is now working in a brothel. Marie and her partner are putting their home on the market. Lea is more stable. Her medication has been adjusted by her GP and she is taking medication daily at the local chemist. She hasn't had a drink for three weeks.

"I know I wouldn't be the person that I am without bipolar but it does take things away from life. It takes away the ability for you to have a job that lasts, it takes away what everyone needs - a group of friends. It's a very lonely world. But I'm never giving up - even if I get to 60 and finally nail it then, I'm never going to give up."