Entry 5: May I Be of Assistance?

Attempting to describe what the relationship is like between a "PA and client" has had me stumped for a few days. Caz asked a lot of questions which led me to thinking how on earth would I describe what it is like having a carer, without needing to be looked after.

I always feel like a bit of a goon when I mentioned my PA, because in the regular world people with PAs are highflying business types and those who are in need of assistance organising their life because they just have so much to do. It is a term that is normally only ever associated with The Office Environment. So, why on earth do I have a PA instead of a carer? Well, it comes down to dignity I guess. Those who are in need of care often are people who cannot speak for themselves, who are very vulnerable and unable to physically look after themselves or ask for help. Being cared for is a lovely notion when it is a loving member of the family as an expression of love, but when it is strangers coming in to make sure that as a human being you are maintaining a certain level of hygiene, nutrition, basic standard of living etc there is something very demeaning about it. It suggests that you cannot take care of yourself, be independent, think for yourself, that you are reliant on other people; a weight on society who is draining funds and resources.

One of the very, very few things that was not a bad thing when I had my accident was that I was still myself – I still have my mind. I am still able to think for myself and make decisions, and I am lucky enough to have been injured at a point in my spine (never thought I'd say that in any context!) to be able to speak and breathe. Therefore, I can speak for myself and let my decisions and opinions be heard. I know how to take care of myself and how to direct that care. So I am assisted personally, rather than taken care of.

I have for many years been closely linked with people who have needed carers. At one point I was a carer myself going into people's homes and looking after them – helping them to dress and undress, helping them with meals, helping them with their continence… And now it is me who is being helped. I think this has been quite important in my working alongside PAs over the last two years because it helped me see things from their perspective and if not just my own.

When I was first considering leaving the spinal unit, and setting up the house and my care package, I spent many a session with the psychologist and on training days working out how to live with a PA. There is so much to consider, and it's all affected by how they are funded, and how much time you get given. It is a very unique relationship because they are not your friends, and yet they will know things about you, no one else will ever know. You do not draw close to them emotionally, but I have to trust them enough to tell them my pin number. You can give precise instructions and yet it will never be the same as doing it yourself. I may want to leave the house on my own, but I always wonder if my laptop and other valuables will still be there when I get back. In many ways it can sometimes feel like I have a servant. I was always so independent, that I did find giving instructions and asking them to do things for me very hard. In the beginning I had quite confident PAs, who practically told me what to do! As time has gone by my confidence has grown and I feel more able to command situations and direct the person with me. There was a run of months where I had a different PA every 2 to 3 weeks, and I came to dread having a new person who I would then have to quite literally train in "The Ways of Helen". In the end, a very good friend prompted me and then bugged me to produce "The Book of Helen" for every PA to read saving me from having to repeat everything all the time. The book is now available on Amazon at a retail price of £6.99… Just kidding! Seriously though, the book did help in some respects with those PAs who were conscientious enough to read it and those who had a good enough grasp of the English language to understand it.

On the whole I think I've been very, very lucky with the PAs that I have had. I had heard horror stories of what life was going to be like living with them, and having someone constantly around in my space both annoyed me and fed my fears of how vulnerable I had now become. For the last year or so I have had two steady PAs working with me, with only the odd stranger here and there. I basically got to pick them from the group that had flowed through the previous year, and they were happy to come back and work with me, which is always nice. :-) Having someone regular working with you does make all the difference, and although you know that it is essentially a business arrangement, one hopes that the PA has chosen that line of work because they have a caring nature and a good heart.