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Joe and I finally managed to sit down and have a useful conversation about how we felt about Julie’s continuing self harm. It’s difficult to find time for this sort of complicated and subtle conversation when you are both busy working, and also trying to manage the practical problems of having to care for a member of the family with such a serious mental illness.

Such a conversation was long overdue. We were both having difficulties with the situation. Incidents still occur regularly, and there is no sign yet of them coming to an end. Julie has been improving in lots of ways – she has been on a very successful work experience placement for example – but she is still ill. In the bad old days everybody knew that she was ill; these days not many people realise what goes on behind the scenes, but quite a bit still goes on. She had to call for an ambulance for example, the other day, to the astonishment (and alarm) of many of our neighbours.

The problem in the long term for parents is that you don’t stop reacting, and the reaction doesn’t stop being painful and destructive. When there is a particularly frightening or messy incident, you experience a wave of distress and anxiety which can continue for days, long after Julie herself is beginning to bounce back. It doesn’t really matter whether you’re very actively involved in the event – getting stuck in with the First Aid box and then sitting with her in A&E – or just hearing about it afterwards from your partner.

Nor does there seem to be any way of protecting yourself, keeping the emotion boxed in, or bracing yourself for the impact. I know that some families reject a child who has serious mental illness (quite a few end up in care) and I can see how for some families this is the only solution that gives them a fighting chance of survival.

Sometimes I get angry after an incident. I got more angry when I was recovering from an operation and I was feeling physically very vulnerable. Joe often gets angry. It does feel sometimes as if all the love and care you pour in is being rejected, and it can take a day or two before you can forget this when you speak to them. Joe still feels guilt too – I stopped feeling guilty long ago – but he still wishes he could keep his little girl safe and stop these bad things happening to her. Both of us experience feelings of despair and hopelessness, overwhelming grief, sudden flashbacks, and difficulties sleeping.

It’s important to acknowledge these huge emotions and their impact on us and on Julie. There’s no point trying to pretend to Julie that we don’t feel anything, as if we were automatons. At the same time, we have to be careful not to beat up on her when she herself is at her most vulnerable. How easy it is to let the anger slip out, to list all the things she has jeopardised, to threaten and invoke the spectre of the disaster she has almost brought down on our heads. The hard thing is to find safe ways of saying “We love you, we hold you, we hate what you’re doing to yourself, but we know we can’t stop you doing it. We will go on being here for you no matter what you do.”

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Somethings never change. Five days after my thyroid op, I am healing up well but still a bit to go. But home comes Julie from school today, self harms yet again and has to be packed off to hospital for stitching. I must have done a good job at hiding my feebleness from her then 🙂

I have taken to writing more about these incidents back on my JuliesMum blog (today’s is here). I am not sure why I feel the need to separate out these two parts of my life: I suppose I am vaguely aware that not everyone relishes the (often rather gory) details. My JuliesMum blog is often read (or used to be read) by many people who have their own struggles with mental illness, who are neither surprised nor repelled by news from the roller coaster, but who may not have heard the tale from a carer’s perspective before.

It is hard for Julie at the moment, with exams looming and me out of action. I was a little harsh on her when I packed her off to the hospital, frustrated by being unable to change anything, but I am truly sorry she feels so bad. Let’s hope she feels stronger soon.

20140207-144033.jpg I’m trying to take a step back: step back from caring so much for my children, step back from doing so much for them. I think it’s a good thing for me and for them.

I didn’t think it would make much difference when Julie turned 18 (not so long ago) but it does. She may have been in adult mental health services for a while, but now she is legally an adult in every sense, it has made a difference. I realised something had changed when the school mentioned that they wouldn’t need my consent any more to take her on trips. (I still have to pay for them of course!)

It is a struggle though. This morning, as the rain lashed down, I had to really fight to stop myself offering Julie a lift to school. It is only a mile, and she is a very capable cyclist, but the urge to protect her was very strong. I had to remind myself that she is able-bodied and at her age I was not just cycling to school but travelling to the other side of the country to start university. It would be kindness to drive her there in the car, but it would reinforce the belief that she cannot cope without me.

The problem is, if you don’t stop looking after them, they don’t learn to look after themselves.

Another watershed: the self-harm is still going on, but not quite to the same degree, and now I ask her to dress the wounds herself if she can. Julie had to go to A&E more or less every three or four weeks through the whole of last year, but at the moment each incident is less severe and we can often treat it at home. I want her to learn to do this by herself: know where the antiseptic is, and the plasters, and recognize when it’s too serious for her to handle alone. It’s a huge shift, and a hard step for me, but it is important. It may mean that we run a risk of poor treatment in the short run, but in the long run the risk of having a fully grown adult dependent on her mum is much more insidious.

Joe has been away for work this week, and it has been a good excuse to try and drop some of the habits of doing so much for the kids. Instead I’ve asked them to help me round the house, doing the washing up and emptying the bins more often. I am already beginning to imagine the day when they are more competent than I am – I shall be quite happy to be laughed at!

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I have been ill and in some ways being ill simplifies things. It becomes easier to say no, even when the demand is very pressing. It becomes easier to sit still and listen and watch the world go by.

I spent a day in the local hospital having some tests, and sitting there on the ward to which I was temporarily assigned, I watched the other patients; perhaps eight of us in all. The other patients were all very elderly, very frail, living from one moment to the next: a typical general emergency NHS ward. By comparison with these older patients I was young and, apart from this temporary suffering, generally in good health; I was fit enough to walk from the ward down the long hospital corridors to each of my various scans and tests without the indignity of a chair. I knew I would get home that night; most of my companions did not know exactly when they would see their homes again. I was not frightened by my condition: I was confident that whatever it was would be resolved somehow in one way or another. In all honesty I was enjoying the chance to be alone, to endure my pain in relative comfort without the constant demands of family. I was a tourist in this world of sickness, but the other patients, they all seemed to be natives.

Some of my companions had attendants, husbands or children, sitting patiently beside them, translating their needs, their vague discontents, to the nurses. Occasionally, voices raised for elderly ears, rang out across the ward: “She’s just going to take your temperature, Mum!” Some of the carers were elderly themselves, but they sat on on their hard chairs, holding hands with their particular old lady, sometimes chatting to the other patients, smiles and pleasantries lobbed tactfully between beds, conversations about the weather and the food. Staff flitted from bed to bed, fetching, soothing, attentive. Time passed slowly. The woman in the next bed offered me the lemonade which she, alas, could not drink. At the end of the day I was free to leave, and I left, slightly reluctant, slightly relieved to go.

The very next day I was back in the hospital and now I was the carer, the presence beside the bed. My daughter Julie had cut her leg again, deeply, needing stitches. She had been unsettled by my long absence at the hospital the day before. She was confused and disoriented, reciting the words from the notices on the walls. Her voices had told her to cut, and now they were telling her not to talk to us, it seemed. I translated her needs to the nurses, her vague discontents. I felt happier being on this side of the equation: not the subject of the conversation but from the safe “objective” perspective of the well; on the side of the nurses. After all these years of practice I can explain what my daughter needs with great precision. I had found it so much harder to explain what I myself needed when I was the one lying on the bed. But my daughter is quite at home on the bed: the world of sickness is her adoptive country.

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I am smitten by my daughter’s new psychiatrist. He is text-book tall, dark and handsome, and has an accent that makes me weak at the knees. I could listen to him read out a list of psychiatric medication any day – and in fact, that is pretty much what he does read out in the meeting. But of course to my dismay, I have the curse of hayfever and appear with a luminous nose and eyes like fried eggs.

Over the years we have worked with many different psychiatrists, and each of them stands out as a very strong character – some charming, some stern, some repulsive. They have a powerful role, and of course they are aware of this – in the armies of mental health professionals, they are the generals, they alone have power to prescribe – and to section – and they are often in overall charge of their medical unit. Their influence over their patients, especially young patients, can be huge: they can be involved at every level of decision making, from where they live, their education, or whether they can learn to drive. They all develop their own particular way of handling this responsibility.

The patients, and of course the parents of young patients, confer on them almost god-like status. Because you want them to be god-like: you want there to be a cure. You want them to have the power to see inside the soul of your loved one, see what is lost and damaged, and use their powers of magical healing. This is almost always a mistake, and brings inevitable disappointment. Beware the charismatic psychiatrist, and beware prenouncements. “Julie is self-harming because… xyz” they may say, “If we do abc, then she will stop self-harming.” In the end it will turn out that they were wrong; sometimes “abc” was very painful to do, and caused damage of its own.

It must be tempting to speculate, it must be tempting to try and impose order on the chaos of your patients’ lives. They invite you to do it, they beg you to tell them if they are depressed or not, to tell them if the voices they think they hear are symptoms of psychosis or not, to decide whether their mood fluctuations are normal or not. All you have to go on is what they tell you, and not very much else, so you can make up pretty much any story you please. It is like making constellations out of stars: you can see the Big Dipper, or you can decide to draw yourself a whale in tights.

So far Julie’s new psychiatrist has avoided pronouncements, and seems wise. He speaks very little, looks carefully at the evidence, and draws conclusions that are boring but cannot be faulted. I don’t think he will do any harm to her, unlike some of the others. In the meantime, I am more than happy to attend any meetings he is pleased to call. And gaze adoringly.

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