Support: Yes Please, But Please Don't Push

I don't know what I was thinking of when I accepted the offer of outreach support from the hospital - it was four or five weeks ago, Julie was just making the transition to day patient, she was still very wobbly.  I suppose I was not in a position to refuse an offer of help.  Except that the help from outreach didn't immediately materialise: the outreach team is overstretched, and in the event, they couldn't spare anyone straight away.  Still, it was nice of them to remember and think to send someone when they could (which is now) even though, between you and me, we're probably no longer the most in need.

What Julie and I want now is to have a good long spell of no change - the human equivalent of leaving a seed in a dark cupboard in a plastic bag to let it get on with the job of germinating.  We're mastering the art of managing her illness, we're still recovering from the trauma of the last hospital admission, we're just beginning to try out a few more adventurous ideas like our trip to London.  That's plenty for us, we think, and we would just like someone to give us the occasional drop of water. But perhaps we are being too cautious - that's certainly the impression our outreach worker gave.  She turned up on our doorstep first thing on Monday morning, armed with lists of ideas, like a modern-day Boadicea at the gates of London.  We were terrified.

It was obvious that there was a huge discrepancy between what she expected, and the reality of Julie's current situation.  As soon as she arrived, she was astonished to find me there at all - "I thought you would be at work!"  "But how could I be at work with Julie at home?  She can't stay here on her own.  That was the point of asking you to come today, so I could get help with Julie while I tried to work."  How much information about patients do the nursing staff on the ward actually share with the outreach team? I wondered.

This outreach worker has visited us before at home; let's call her Violet.  On previous visits, when Julie was still very ill a few months ago, Violet was a very welcome visitor, mucking in to solve our numerous practical problems and cheerfully dispensing sympathy and good suggestions.  I like this no-nonsense Violet, but liking her didn't make it any easier to handle her now.  On Monday morning, Violet was a woman on a mission, and it was obvious she wasn't going to let us stand in her way; it was clear that now Julie was officially in recovery, Violet expected her to be doing a lot more.  She was going to take Julie to the gym next week, she declared. I could see Julie's face fall.  Exercise is certainly an aspiration, but I've spared Julie the humiliation of trying to put it into practice for the moment, while she copes with her exhausting routine of hospital and home tuition.  Then Violet was planning on Julie getting herself to the gym later in the week.  Hmm, how to do that, even if Julie found an unexpected enthusiasm for the idea?  How would she get there?  No buses, taxis astronomically expensive, too far to walk - welcome to life in the country.  I tried to be as gentle as I could in my explanation: I work, I can't be an unofficial taxi driver, you need to factor in how she is going to get to the gym, or it will become an unbearable burden on both of us.  I tried to be positive, after all, I really don't want to put Julie off - I want her to do these things too - but realistically, I think it's too soon.  Where was the nearest swimming pool then?  Ten miles away, and Julie is definitely not keen on this, I can see her face setting rigid with fear at the very idea.

Thwarted in her plans to turn Julie into an exercising dynamo, Violet turned her attention to our arrangements for the summer.  Oh, we must get Julie doing something fun in the summer holidays!  She doesn't want to be sitting around in the hospital all week!  Julie looked at each other in mutual dismay.  Well, actually she does, that's the plan, we want her to be safe, supported, and gently stimulated.  I had had to go to some lengths to get the hospital to allow her to carry on visiting over the summer.  Oh no, we'll have to find her things to do!  She can go and do fun things in town.  But she doesn't feel safe on her own yet; she can't use public transport on her own yet; and I do have to work, so I need to know she is somewhere safe and supervised.  We've already tried plenty of things over the last two years and they didn't meet these requirements.  And actually, the things that are really fun when you're a teenager aren't organised things anyway.

Eventually I just let her talk, and I squeezed Julie's hand and made generally encouraging noises.  By the time Violet left us, Julie was agitated and stressed; all this talk of change and having fun made her feel vulnerable and frightened.  The criticism implicit in these plans upsets Julie too - she knows that exercise would help her weight, but it is going to take a huge amount of courage and energy to start visiting a gym again; just as she knows that teenagers are supposed to be going out and "having fun" but is uncertain how to begin to do this.  Violet had inadvertently echoed a lot of the criticisms that Julie already hears: that she is "doing things wrong", that she is "not trying", that she should be "doing more".  If I'm honest, she probably hears these messages from me too at those times when I'm not sufficiently reflective - they're the kind of things mothers have said to daughters down the ages - but when you sit and think how it must feel to be in Julie's shoes right now, it's clear that this sort of nagging is not helpful or constructive.

Later I emailed Violet and thanked her and asked if we could slow things down - a lot.  I didn't say that Julie and I had both found the visit very stressful.  I do like Violet's ideas, but they feel premature; I don't want us to have to deal with these challenges yet and I don't think she realises how sick Julie is.  I would really love Julie to go to the gym, for example, but I don't think she's ready.  There's a fine line between giving Julie a lot of encouragement to do something that she really wants to do but finds hard, and pressurising her into doing something that she doesn't want to do at all.  With Julie there's no easy way of telling what she wants, so it's all too easy to cross that line.  It's easy to imagine that you're supporting when in fact you're pushing her.

Am I being hopelessly weak?  Am I encouraging Julie to become hyper-dependent on me?  Should I be pushing a lot harder to get her out of the house and independent again?  Well I've tried all that, and it's always ended up in the same place, with disaster and blood on the carpet.   I could drive off to work on Monday morning, kiss her good bye, tell her to make her own lunch, and that I'll see her in the evening so we can go to the gym together.  Some days it might work out fine; but most days it would push her back into loneliness and misery again; and quite often it would end up with soul-wrenching despair and a trip to accident and emergency.  It's less than two months since the lowest point of the last big crisis, and she's still recovering.  I figure the support job right now is to be patient and let her work out for herself what she needs to do next.  We will all just have to swallow our frustration.