Am I Her Mother or Her Carer?

Over the last few months, there has been a gradual shift in the way I think about myself. Even six months ago I thought there was something preposterous in calling myself a carer. I was her Mum and therefore I cared for her - but it didn't make me into a carer. It was only when she finally left hospital three months ago, and I took back responsibility for her, that I began to entertain the idea that I might actually be one of those things called a carer. The final shift took place when she stopped attending school in early December. Without school taking some of the daytime strain, I had to ask my employer if I could work from home so that I could simultaneously care for her. To explain myself to them, I had to describe myself as a carer, because it made no sense to try to describe the situation in terms of normal parenting.

I was already comfortable enough with the word "carer" to use it to describe myself a few weeks ago, when I had to attend some medical appointments. Obviously Julie had to come with me to every appointment, and I had to explain rapidly to a set of strangers, why I wanted to bring a teenager with me.  She sat quietly in the corner of the consultant's office, or in the corridor while I had a scan. The quickest way to convey why she was there, and why she couldn't wait outside, was to explain that I was "fulltime carer to my daughter". Everyone seemed perfectly happy with this explanation, no one asked questions, and staff willingly kept an eye on her while I was out of sight, going through some of the longer tests.

This week I went one step further and requested a "carer's assessment". This meant that someone from the mental health team visited me at home and we spent an hour filling in a form that focussed on me, not on Julie.  This exercise is unlikely to accomplish any practical results: it does not qualify you for any money or any services. It seems that all I am entitled to is a monthly newsletter from the council's carer support scheme. I already have enough newsletters from the support scheme for parents of children with special needs to paper my bathroom, so I don't need any more.

So why on earth go through with this assessment at all, if it has no tangible benefits?  The answer is that it is partly to reinforce my own sense of what it means to be a carer, as opposed to an ordinary parent. By itemising the ways in which my daughter's illness impacts on my life, it lets me assess what this new role means to me. It is a kind of perspective - standing back and looking at the situation from another vantage point. It is also a way of archiving the current situation - in another year it may well have changed.  I will have the record of the interview as a reminder of what life was like now, and what lay behind the choices I made.

Reappraising my role brings other benefits.  Caring, unlike parenting, can be shared with people outside the family.  Even beginning to think of it in these terms makes it easier to see solutions. This week an old friend of the family with some time to spare, and many years' experience of caring for children, came to spend a couple of mornings with Julie. Let's call her Rhiannon, as she may well appear again in the blog. It is part of an experiment to see whether Rhiannon can take over some of this caring role temporarily, freeing me up to work for a few hours. After one week, it looks very promising: Rhiannon fitted straight into the role, and I could see an immediate improvement in Julie.  There were no more lonely hours spent in front of the TV while she waited for me to snatch a break from work. With Rhiannon free to give her her full attention she was much happier: they played games; she did a little studying with suppport from Rhiannon; they went for a walk. It was the companionship and stimulation Julie had been craving.  It is easy to forget that staying home from school for weeks on end can be a lonely and demanding experience. At the same time it meant that I could work in peace knowing that Julie was well looked after. For the first time in a long time, there was the happy sound of laughter downstairs, and a sense of life returning to the house.