My first PA lasted less than two weeks.  We were assured that she had experience of working with people with spinal cord injury, but when she didn't know what a leg bag was, we had our doubts.  Later that first week she called my wife at work to ask her what I'd like for lunch.  I was sitting in the front room at the time, and my wife suggested the PA might like to ask me!  I remember my wife coming home that evening and being upset, it was hard for her going to work knowing that the person who was meant to be looking after me didn't know what she was doing.

It is extremely difficult to have a stranger in your house all the time.  And it's harder for my wife and son, getting up in the morning and having a stranger there, coming home after work or school and them still being there.  My wife also got quite jealous, knowing that they were with me from the moment I got up to the moment I went to bed, seven days a week.

Our response is to make sure that our PAs are part of the family.  We want them to come shopping with us, to eat with us, to be involved in the conversations at the dinner table.  It means we're all part of each other's lives.  I know that some people prefer their PAs to disappear at times, to go and hide in their rooms, but that's not the way we like it.  They're away from their families too and deserve to be a part of things and have your support.  I had two young Australian PAs for a while; they were here to look after me, and my wife wanted to look after them!  It created a very strange dynamic, but we all talked about it and found it highly amusing.  They're back in Australia now but we still keep in touch with them.

When I first came home I'd already accepted that we'd have to have new people living with us.  My wife didn't find it that easy, especially at the weekends when she likes a lie in and I have PAs coming in to help me get up, but she knows it's necessary and so she'll put up with it.  At the end of the day, there's not much that either of us can do about the intrusions.  Whether you are rich or poor, disabled or not, life is a compromise; this is no different.  And the overriding factor is that I'm at home, living a normal life, with my family.  The sacrifice is just that someone else has to come into our bedroom every now and then.

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