The Best of Times, the Worst of Times

by Penelope Rowe

  I had a terrible confrontation with Mum while she was in hospital for an arm operation. As is often the way, the fight started over something ridiculous. But it touched a raw nerve inside. We argued over how we’d celebrate my birthday. As Mum was just about to come out of hospital, she said she wouldn’t have the energy to cook anything. It was then I decided to speak up for what I wanted. Looking back, it seems ridiculous that my desire for a roast chicken provoked this argument. We sobbed and yelled at each other. I poured out my anger and hurt. But it was mixed with so much personal pain. I had just ended another unsuccessful relationship and was feeling horribly alone and 157 unloved. I felt appalling when I left. I rang Harriet and tried to explain my hurt. She understood. She and her gorgeous husband, Tim, cooked my birthday chicken dinner.

  No relationship is ever straightforward and simple. It was important for me to confront those feelings of resentment and hurt head on. It has helped me, not only in my relationship with Mum but also in how I relate to those closest to me.

  At my wedding, Mum gave the most incredible speech. Her searing honesty and courage in laying bare her love for me, as well as publicly thanking me for the role I’ve taken in the family, will forever sustain me. On that, the happiest day of my life, she read a poem to me, as well as my two younger sisters. The poem is now framed beside my bed:

  How Do I Love Thee?

  Elizabeth Barrett Browning

  How do I love thee? Let me count the ways.

  I love thee to the depth and breadth and height My soul can reach, when feeling out of sight For the ends of Being and ideal Grace.

  I love thee to the level of everyday’s Most quiet need, by sun and candle-light.

  I love thee freely, as men strive for Right; I love thee purely, as they turn from Praise.

  I love thee with the passion put to use In my old griefs, and with my childhood’s faith.

  I love thee with a love I seemed to lose With my lost saints,—I love thee with the breath, Smiles, tears, of all my life!—and, if God choose, I shall but love thee better after death.

  As a carer, it’s important to make time for yourself. It can be very easy to get caught up in looking after your mum, husband, partner, brother, sister or friend that you forget to tend the most important person: you. You are too precious to let yourself get lost in the chaos of mental illness that can take over your life. When I was younger, I used to escape to my boyfriend’s family, or stay with my girlfriends. As I got older, I still found it essential to make time in my diary for fun, frivolous things. Take a walk by the beach, book a massage, sit in a coffee shop reading a trashy magazine or buy a lipstick! We all have different escapes. But find something that works for you, and make sure you treat yourself on a regular basis. Exercise is also a great way to get rid of stress and anxiety.

  Make sure there is someone you can talk to—don’t ever feel you have to carry this burden alone. When I was younger, I kept it deep inside, and I paid for that silence later in life. But the work of healing and caring for myself has been helped by my involvement with mental health organisations over the past seven years.

  Mental Illness Education Australia (MIEA) was the first organisation that approached me to talk personally about my experiences, to help draw attention to its programme. MIEA goes into high schools to talk to teenagers about mental illness. Two people present the programme—one of the presenters has a mental illness, the other is a carer. The aim of the programme is to raise awareness of mental illness, as well as fight the stigma surrounding depression. But, like so many worthwhile mental health programmes, it still struggles to get enough funding. I shared my personal experiences publicly for the first time at a fundraising night for MIEA. There was a small group of people gathered together for the evening. I was incredibly nervous about revealing myself in front of this friendly, caring group of people. As I started to talk, I could feel my voice giving way, as the lump in my throat just grew and grew. By the end I was close to tears. But I didn’t feel ashamed that I’d broken down, because of the response I got from people at that small, welcoming gathering. That first outing gave me the courage to keep speaking out. Pretty soon, I found I was getting many requests to speak for mental health organisations.

  I spoke at evenings for ARAFMI, an association for relatives and friends of the mentally ill. The organisation is particularly strong in the Newcastle area of New South Wales. At these gatherings, I felt safe and understood, as my story was also their story. I am always touched by the generosity of people, but at the same time I also get so much personal nourishment from such events.

  I’m also a big supporter of the Garvan Institute. Its scientists and researchers are doing extraordinary work in trying to identify the gene responsible for developing a particular type of mental illness. Their work is also about coming up with better medication and more effective ways of treating depression. There is still so little that is known about the workings of the brain. And the Black Dog Institute in New South Wales is also researching the causes of depression. It’s an educational, research and clinical facility that provides insight into mood disorders. These include a range of disorders including depression and bipolar disorder. Its work aims to improve the lives of those affected, as well as the lives of their families and friends. I’m a supporter of the Institute, and try to speak at its functions when I can.

  Much smaller organisations are also working hard to increase awareness of mental illness. I was a guest on a panel organised by a group of general practitioners in Southern Sydney. The event was held at a function room in the local Leagues Club, which ended up being packed full with about 1000 people. Everyone was keen to share stories, and desperate for information about how and where to get help for themselves, or for someone they love.

  Take heart, if you’re reading this, that you are not alone. There are many people caring for their families through tough, terrible times, and there are many organisations that can offer practical support to help get you through.

  Beyondblue is a national body that runs campaigns to fight the stigma, and increase public awareness, of depression. It is involved in a number of terrific programmes in Victoria for young people, who have a parent with a mental illness. I helped launch one of their programmes in Melbourne recently, the Paying Attention to Self (PATS) programme is for young people aged between thirteen and eighteen years of age. It’s an early intervention programme aimed at preventing the development of mental illness in young people at risk. Beyondblue also works with Rotary clubs across the country. In New South Wales, the Rotary Health Research Fund has contributed millions of dollars to research into mental health issues.

  I have also been lucky enough to work with the Lifeforce, suicide prevention programme. It goes out into communities, and runs seminars, to help empower people to recognise the signs of someone at risk. The dynamic women who run this programme will often travel to remote rural communities. I believe the work they are doing is making a real difference to the lives of people touched by suicide.

  My husband and I are patrons of the Mental Health Council of Australia. It’s an independent, national representative network of organisations and individuals committed to achieving better mental health for everyone in Australia. The Council also works closely with other agencies such as the Human Rights Commission to ensure that the human rights of people living with a mental illness are being met. It also works to influence mental health reform by making sure government policies address mental health issues. I was invited by the Council to talk to a parliamentary breakfast of federal politicians in Canberra. I was thrilled to have the opportunity to talk candidly to politicians about a subject that was close to my heart, but was not a subject that was high on the political agenda. It was heartening to see the number of politicians who made the 6.30 a.m. breakfast. It would be even more heartening to see mental illness being put at the top of the political agenda.

  I have been lucky enough to cross paths with some incredible people who are passionate
about mental health issues. Some of these people include Greg Wilson, an artist based in the Hunter Valley and his friends Josie Alder and Aaron Cootes. Greg, who suffers from depression, asked me to open his gallery in the Hunter. He is using his profile and personal experience to help others battling depression. Craig Hamilton is another trailblazer. I first heard Craig’s story on the 60 Minutes programme on depression. I later met Craig when he asked me to launch his book, Broken Open, at the National Rugby League headquarters in Sydney. Craig comes across as a typical Aussie bloke, but he is so much more. He is willing to reveal his personal experiences of depression to increase awareness, and to encourage other men to get help. I felt very teary when we met. The look in his eyes told me that he understood Mum’s journey and our family’s journey. It is meeting people like Craig, Josie, Greg and Aaron that has been one of the most rewarding and meaningful aspects of speaking out about my family’s personal experience.

  Chapter 11

  O the mind, mind has mountains; cliffs of fall Frightful, sheer, no-man-fathomed. Hold them cheap

  May who ne’er hung there.

  —Gerard Manley Hopkins

  Penelope: In the middle of 1999, I was discharged from a large public psychiatric unit. The conditions on the unit at that time were a disgrace and I was determined to draw public attention to them. I wrote to the Editor of the Sydney Morning Herald, but my letter was passed to the Health Editor who then ran a number of pieces. This is what I wrote:

  Is it because the mentally ill are considered ‘mad, bad and dangerous to know’ that the conditions under which they are hospitalised and cared for at —— are not denounced by the Health Department, the Government and Opposition and the media? I can only assume so.

  Or is it that the mentally ill are so often confused, incoherent or voiceless that we can conveniently be ignored? Well, at present I am none of these and I will not be ignored. I must speak out to condemn apathy and inhumanity.

  These are the facts: all the walls are dingy, scratched and scuffed; all the windows are dirty; the carpets are all threadbare and filthy; the grey ceiling insulation is hugely water-stained, rotting and, in places, has entirely disintegrated. My family had to supply me with a light bulb for my room, bathroom cleaning equipment and cockroach spray; the bed was a surgical ward cast-off and the chest of drawers was jammed; when forced open it was found to be full of cockroach dirt and scurrying cockroaches. (St Vincent de Paul and The Smith Family will not provide broken or dirty furniture to their clients out of respect for the client’s dignity.) General cleaning was inadequate and the food appalling; the laundry facilities were situated among the rooms and the noise was intrusive from early morning until late at night; the dank inner courtyard was dug up with jackhammers during my hospitalisation because of raw-sewage seeping; it now stands abandoned with a deep water-filled pit, a huge pile of evil-smelling earth and wooden stockade and a wire fence; the occupational therapists regularly bring equipment like mugs and tea towels from home; if the coffee allocation for the month is used up early, the patients must go without; I have seen the same fluorescent light flickering for over six years outside the Pro-fessor’s consulting room.

  Have I anything positive to say? Yes. I have been treated with care and compassion on every admission but why any of these healthcare providers would want to stay in the public health system defies comprehension.

  Beware. Mental illness is on the increase. ‘And therefore never send to know for whom the bell tolls; it tolls for thee.’

  Penelope Rowe

  After the newspaper reports were published, I was encouraged by staff at the hospital to write to MPs with all the details I had, and I went to the hospital to photograph the conditions. The staff themselves were, of course, unable to speak out, as they would have faced dismissal. We all know what happens to whistle-blowers. So, as I said in a letter I then wrote directly to the Health Minister:‘Let someone with compassion come with me. I’ll show you. I have nothing to lose. I’m one of the mentally ill.’

  The Opposition attempted to have the matters I had raised debated in parliament, but was defeated on numbers by the government. Hansard of 29 June 1999 records the valiant attempt by the Shadow Minister for Health.

  The problem is that the health dollar has to be spread over so many services, and mental health is not an engaging area to be involved in—unlike children’s hospitals—nor is it a dramatic, cutting-edge area, like transplants. Most people have never been inside a mental hospital, and all they see are the poor souls wandering the streets, often dirty, disfigured, smelly, shouting imprecations. Worse still, when the very rare occasion arises that a mental patient kills someone, the papers make it front-page news and this further stigmatises the rest of the mentally ill. When we are ill, we are not attractive people. We are often rude, abusive and demanding. That is part of the illness, and it certainly doesn’t make us lovable. People who willingly support other areas of health prefer to turn their backs, out of disgust, embarrassment or confusion.

  New mental hospitals are being built, but some very old, depressing places remain. I know. I’ve seen them in my capacity as an Official Visitor. The Minister for Health appointed me to this role in 2003. Official Visitors are a paid team who come from the ranks of doctors, lawyers, carers and consumers of the mental health system. We go into all the mental hospitals in the state, both public and private, as advocates for the patients—or ‘clients’, as they are more politically correctly called! We can go in at any time of day or night, weekdays or weekends. We do not have to give notice of our arrival. We inspect all the registers to see that protocols are being observed, that the paperwork for patients scheduled by the magistrate is absolutely correct. We look to see how many times or why a patient is put into the seclusion room and whether rapid sedation was necessary and for what reason. We check that patients’ files are properly kept, and that all incidents and accidents are reported and the outcomes recorded. We then go on to the ward and talk to the patients themselves to see whether they have any worries or grievances they want to report. Usually people who have been scheduled by the magistrate because they are considered a risk to themselves or others have very little insight into why they are being held against their will, and want us to get them out. This we cannot do. However, often just being able to let off steam to someone who is not a nurse, doctor or part of the system seems to help. Others are worried about their families or their rent. If this is the case, we look at their files and make sure the social worker is aware of and acting on these worries. We can then reassure the patient. Even in the new facilities, it has been necessary to check for hanging points as some patients are suicidal and determined to find a way and an opportunity to put themselves out of their pain. We also inspect the facilities for hygiene and inspect the food to ensure there is fresh fruit and a water cooler. The psychiatric wards in the gaols are also inspected monthly.

  Amendments to the Mental Health Act are now being devised and we are pushing as a matter of urgency for Official Visitors to be allowed into the detention centres to check and report on psychiatric patients in these facilities. There is also an Official Visitors phone line, the number of which has to be on prominent display in all facilitities. Any patient can ring a central number and one of us will be phoned to call the patient back.

  Carers and families can also phone us. I find that these phone calls are often very reassuring for patients. For example, they may have to go before the magistrate in the next day or so and they are understandably concerned. The magistrate has great powers. After all, there is nothing much more serious than depriving people of their liberty, and that is what deciding to schedule a patient for a particular period is all about. The patients may be, among other things, very paranoid and untrusting of the people they consider are holding them without reason. They recognise that we are not part of that group. What I try to do is explain exactly what is going to happen when they see the magistrate and what their rights are. If they want me to, I tell th
em I will ring their nurse or social worker and ask them to take the time to reassure the patient again.

  We also take very seriously any reports of assaults on patients, unnecessary seclusion periods for disruptive behaviour (because being disruptive is par for the course when you’re mentally ill) and, most importantly, any reports of sexual assaults. The protocols for this latter category are very specific and very stringent. The Principal Official Visitor has direct access to the Minister if this is considered necessary, so doesn’t have to go through the bureaucratic rigmarole. It is actually quite extraordinary to consider the unlimited access we have to all matters pertaining to the mental hospitals and their dealings with their patients. We try to exercise these privileged rights with rigour and compassion.

  But, while we can help to stop abuses in mental hospitals, improving conditions means that the Health Department must be prepared to find extra funds if something is patently wrong. For example, to illustrate a very simple and inexpensive matter, the outdoor area in a hospital in western New South Wales had no shade cover. In the heat of summer, this made the area imposs-ible to stay in for more than a few minutes. Furthermore, some medications react with sunlight. It took numerous attempts before funds were found to provide something as simple as shadecloth.

  Sometimes, when I talk with depressed patients and their visiting family, it helps to tell them that I do actually understand what they are going through because I share their illness.

  ‘What do you do to get better?’ they may ask.

  ‘I wait and try to hope,’ I sometimes say.‘And you will get better because you are doing exactly the right thing.You are getting help.’