According to this blog it’s nearly 9 years since I stopped having carers. My care package to manage my lymphoedema has been in place for just over three weeks now. And it’s going well. Most of the carers I’ve met I’ve got on well with (some I’ve only met once so it’s hard to know how I’ll get on with them) and there haven’t been any of the problems I anticipated with getting my wraps applied tightly enough. I am however remembering several things I had forgotten about having carers. Here are five of them.
1) Your time is not your own. Just because the evening visit is scheduled for 8 doesn’t mean it’ll happen at 8. Officially they are allowed to come 15 minutes either side of the time without letting you know. But that doesn’t account for the times they changed the scheduled time to earlier and forget to tell you.
2) Never make an attempt to finish reading your book or watch a film before the carer comes they’ll turn up as you’re about to finish it when the ending has just got interesting. The same applies for making dinner to be ready not long before they come
3) The actual carers who come out are brilliant but invariable you’ll get annoyed with the people doing the organising because it’s a difficult job filled with bureaucracy and bureaucracy and being able to live your life with support aren’t good matches.
4) Every carer needs a different level of reminders/prompting when doing your care and it’s a really tricky line to negotiate between giving someone enough instruction to do it right and so much they feel you think they’re stupid. It also requires remembering who which applies to.
5) Everyone you’ve ever met has an opinion on you having carers and for the majority of those (especially from those who’ve never had carers themselves) it’s best to ignore it. The experience of care and how the system works is very hard to describe and it’s probably best not to try.