I have found this week very hard, not so much in the physical sense but more in the situation of coming to terms with things that are out of my control. I believe that I now understand much more how Joanne feels and others when they talk about social services and the like coming into your lives and taking over or trying to, this week we had a very long meeting with Piage’s OT who is very supportive and very nice, but I became very aware we found ourselves justifying how we wanted things for Paige, how Joanne felt her care should be, explain why we needed equipment and then finding that suddenly the whole thing takes the next leap into which the home is becoming more like a care home.
Joanne wants as we all do for Paige to spend all her years with her family, but it does hit you hard when suddenly they tell you they are going to install tracking in the sitting room because that is the only way we will be able to let her sit on the sofa as she is getting older and heavier, for her comfort as well as safety to our backs she will have to be hoisted in and out of chairs and beds. Now when I was working as a professional in the NHS I took this sort of thing as very common, and was always screaming their must be a hoist there, it never effected me in the same way, after an hour or so I would walk away from that patient and onto another, although I always tried to make myself think, this is a persons home consider that at all cost, but I now ask myself how much did I consider that. I know that everything they say to us is correct but it is the way these things are handled, not can we talk about the future have you thought about the need for some tracking into the sitting room, that’s how it should be said, but these people did as I did become so professional that you forget what effect that must have. After that meeting I became very down with myself, as I saw the years stretch ahead the problems finding places we can help Paige to toilet, just getting in and out of a car is soon going to become a much longer harder job, no more sitting her on the swings in the park, but then I asked myself would I want to be without her, stop being selfish take the challenge to make her life and others as full as possible, no I could not think of a day without her, she brings so much to us that we should at least be thankful we can put our energy into being more inventive and finding a different way of doing things, I just wish I had the means to make life gentler for my daughter as she takes all this all straight on the chin and never falters but I know how heavy this responsibility is, all I can do now is to offer the best support I can.
On a much lighter note today Sunday, we had a really nice impromptu Sunday as we just asked Jo and Graham if they would like to come up for lunch with the children which they did, we open a couple of bottles of wine and had a lovely relaxed Sunday together and put our cares and worries away for a while.
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