I’d like to collect the research on stress in carers or ‘caregivers’ and see how much of it attributes the stress to the way we are treated by public bodies. A lot of the small amount I’ve read seems to confirm that carers need a break, they need support etc and that the psychological effects are significant.
I did a very brief list in my head, of the last 11 years, just jotting down the major stress points. The first 18 months were horrendous, and scoring out of 10, my son and I both had top marks for ‘difficulty to care for’ and stress levels.
But as I went through the years in my head, I realised that I couldn’t have 10 as the maximum score, because there have been times when I’ve felt more stressed than I did back at year 1, when I thought things were the worst they could be.
I couldn’t draw it, so I’ve put it into a chart (didn’t really know what I was doing, and some of the figures are in ££s, which I can’t suss out how to change, but never mind. Maybe it’s a sign that all things equate to ££ in this game??)
Just for clarity, I consider zero to be what I’d have scored with my second child, but that’s not to say I think anyone having a non disabled child has it easy. Each score has a very wide range from start to finish!
The majority of the increases in my stress, haven’t been as a result of my son’s ‘condition’, health or illness; they’ve been because of unavoidable interactions with public bodies. Later on in the expedition, Alfie became very difficult to care for, because of his ‘behaviour’, which increased my stress levels, and which we now know was as a result of the ‘behaviour’ of public bodies.
The upshot, is that at a time when my son is really coming into his own, (and yes, he is still hard work to care for) and his care needs are quite stable, my stress levels don’t seem to be adapting to the positive experiences his progress brings. I’m in the mysterious world of EHCP land at the moment, and this is what is causing the stress I’m currently experiencing. I shouldn’t be experiencing this stress, because I’ve got support, I have respite, I’m getting more sleep than I’ve had in the last 10 years. Public bodies who treat parents like me with contempt, flout the law, bend the rules, move the goalposts are adding to the stress we accept as normal (when it really is far from normal!) and often adapt to because it’s stable and we’ve learned to cope at this level (even though it could be much better) and they are killing us. Cutting our life expectancy by years.
Research should be done into why public bodies are being allowed to kill unpaid, (usually) family carers. Many carers know the system inside out, but we are in a no win situation which makes us powerless. Public bodies rely on parents/carers giving up, and there are times when I feel like doing, but I never will, because I couldn’t live with myself if I did. Research should be done into why public bodies are allowed to get away with what they do, and I really mean local authorities, although other public bodies are just as bad. Again, the disabled person is portrayed as the ‘problem’ and that’s rubbish. It’s the people behind the services who are the problem. The cuts don’t help, but let’s call a spade a spade, there are just some horrible people who find it easy to make things as difficult as possible for others, and that kind of attitude is never changed by funding. Perhaps the research would cover the thought processes of such people.
Is anyone interested in conducting this research?
Please let me know.