I have to go and shout at some people tomorrow - and I don't really want to. Shouting is stressful but it's usually the only way to get the NHS, Social Services etc. take you seriously. This particular shout will be about the fact that the plans for future learning disability services here take no account of people with complex care needs, unless it's about targeting cuts for what are perceived by the treasurers as 'expensive' care packages. They're expensive because they are the most needy and they're still a damn site cheaper than they would be without the free work provided by carers.
At a more personal level, the stress factors are different but no less real. We've had 27 years as primary expert carers, but because we have no official qualifications in the eyes of the service providers we get put in impossible positions. (We do both incidentally have relevant experience and qualifications - in nursing and social housing but as carers these don't count.) When my son is severely ill we inevitably become the nearest thing he has to a 'clinical lead' but it's all unofficial and the nurses often feel uncomfortable or even threatened by it. We find ourselves thinking about how people are going to react when what we need to do is concentrate on what needs to be done. And then we get criticised for 'not letting go' and letting the professionals deal with him. After 27 years, it's the equivalent of being made redundant from a job you're 100% emotionally committed to. I'm afraid we're likely to upset some people we need desperately because we are very focused on my sons needs - it isn't that the team aren't dedicated, but he isn't their son and they go home at the end of the shift, have holidays and can resign. We can't - and don't want to.