Caring About Carers

As with many people with a physical disability, I have to have somebody nearby to help me if I need something. This is fine when that person is a family member or a friend who I get on well with, but sometimes it can be difficult to find the ideal person.

Most of the time when I am at home, I like to work by myself at bits and pieces on my computer. I can go and find somebody if I need a hand with anything. When carers came, I used to find myself thinking ‘what can I do with…?' as I didn't want them to feel I was ignoring them, or being rude by just getting on with my own work. In one case, I had to think of something different to do, as the carer would stand or sit behind me, watching me, just in case I needed anything. This really got on my nerves! Now I have a programme for my P.A., so at the times I don't need her she knows what else she can do to help me, such as keeping my clothes shelves tidy.

I am now a member of the D.P. Chichester Network. I used the file to find a new P.A. to help me with my children's craft club I run from home on Saturday afternoons. I found this was a really good way to find someone new to help me for this particular task. I looked through my file of members and found one who sounded suitable, as she liked a challenge and had worked with children before. I contacted her and luckily she was able to start straight away. It was the first time I'd had a helper who was younger than me – I felt rather grown up and we work well together!

Using the Chichester Network was a much quicker way of finding a new helper than through advertising. My sister and I went through this process a few years ago when we were looking for a night carer. We spent 2 afternoons meeting and talking to all the candidates, but after seeing 8 people we felt very exhausted and not particularly happy that any were exactly right. We later found our present one through an agency.

I have been very lucky to have some really good helpers who I have been able to get on well with. I feel sad that I do not see much of a few who I had while I was at college. They felt like real friends to me as I spent so much time with them, but to them, I must have been one of many students who they have supported. It was quite hard to have made friends whom I trusted, to then find that when I left college I had to start all over again.

I said earlier that I prefer to have family or old friends to help me. This is because I don't have to explain things to the people who know me so well. My parents are of course the best as I can be totally myself and do not have to worry. They have (obviously!) known me and my older sister our whole lives, and have the most experience of us both. I find myself starting to worry if they both go out and leave us with helpers, as I then feel that I need to keep an eye on the helpers to make sure they are calm and managing their tasks. Some helpers have started to panic or get a bit stressed if something goes wrong, for example, we once had an outbreak of flying ants in our kitchen, so I had to keep the helper ‘cool' while she went to find the fly spray! I still feel neither my sister nor I have reached maximum independence as we haven't found anyone who enables us to feel as relaxed as we do with our parents around.

It would be helpful to have a helper who has a particular experience of specific disabilities. In my case, Muscular Dystrophy. The most important factors are the helper's personality and initiative to be able to find things to do, without asking “what shall I do now?”, while at the same time being available and interesting company. I feel that the term ‘carer' is a rather bland name for a very specialised, responsible and important job requiring exceptional qualities in so many areas.

Lizzie Baily lizzie@wellspringwestsussex.org.uk