That pressure injury or sore was 7cm deep, it resulted in me being in bed rest for seven months to heal, that was quite a traumatic experience in its own way and I can talk more about that
I think I spend a large proportionate of my time either managing my care situation, or managing the medical situation that I’m in so dealing with appointments, dealing with scheduling appointments, dealing with getting hold of doctors, chasing things up when things don’t happen, all that sort of thing. That I think I consider these days to be my full time job.
I do try to keep it as consistent as I can only because with the number of carers that come through, we do struggle to find continuity of care, we do struggle to find people who are consistent that come back and I think that is again, back to the pressure side of things, that can be a challenge too when you’ve got new people coming in.
The quality of the care varies just depending, I’ve had some very good carers and some of them will have done very minimal care, they will have just come from domiciliary and then gone to a training course in an office and then shipped out there. So I do end up doing a lot of the training if you will myself because everybody’s routines are slightly different.
Interviewer: It sounds like you’re carrying a huge amount on your shoulders, that you’re managing your care package, you’re managing your own health, you’re having to train carers who are coming into you where the knowledge isn’t the standard that you require, on top of running your life like everyone has to do which isn’t straightforward. That’s a huge amount for one person to carry.
It is and I can do that now, if you ask me that in 10 years’ time, I don’t know if that answer would be the same. I don’t know how I’m going to be doing this in 20 years from now, you know?
There’s only so much you can physically you can do yourself, there’s only so much bandwidth that you’re bringing and if you’re in pain, which I am sometimes, that becomes even more difficult because the pain is your focus, it’s not really necessarily the carers, again that’s when mistakes get made because you’re just trying to deal the acute rather than you need to be able to see something, say something, whatever.
So yeah, mental health wise, I think fortunately, I do speak to a therapist, a speaking therapist weekly, that helps me sort of destress in a way or at least get out all the frustrations and whatever that are going on. What I’ve found since I’ve been talking to her and I’ve known her for a while now, is that I would say if we have four monthly conversations, out of those, at least two of those would be spent talking about care and that’s not really where I want it to be. I would like be talking about other things rather than, “this is what’s going on this week because of my care ..”, blah blah blah.
That’s how much of an impact and an influence if you will the care situation has in my particular life. It’s difficult, it is difficult.