On Caring - Any Advice?

For those of you not in the know (even though I waffle about the man in nearly every post) The Dutchman and I are trying to move in together and we are looking for an UsHaus to live in and he unofficially proposed last year (in a sort of 'Do you want to get married?' way, I'm not a one for diamond rings). I haven't lived with another adult for ten years now, and so I'm a bit out of practice - more to the point, I haven't ever had anyone else be somewhat-responsible for my care before. Sure, I'm a carer to my autistic son but he's in a special needs school and spends more and more time at his father's now due to my health. And I am Stubborn. I think I'm still uber-independent (even when I'm not). While I know a lot of stuff about caring for my son and I've had to go through the entire obstacle course of getting support (sometimes a given value of 'support') from various bodies, I'm still somewhat woefully ignorant in other areas.

The Dutchman and I both have colds, and the Dutchman's may be turning into bronchitis. He was supposed to get flu jabs last year but forgot (his memory is bloody awful). So I told him that carers can often get a fast-track through their GP for treatment. He scoffed at first - he's never heard of it before, and didn't realise it existed, but sure enough, he found the forms he needed to fill out for his GP's surgery online and duly did so. He then asked me if there was anything else I could think of that he would need to know....

And I drew a total blank. Thing is I'm so used to dealing with seroneg-everything and fibro and so on that I don't even really think about it anymore. Trying to explain it to someone feels like trying to explain how to breathe in and out. And it's all details and info which took me years to accumulate, and I'm not sure where to start without overwhelming him. Believe me when I say the Dutchman's memory is AWFUL. He is completely incapable of thinking on his feet, and even when I take him with me to appointments, he rarely offers information but sits quietly in the corner because 'he doesn't know what to say' (tbh I bring him for the 'patriarchal bluff' - which is what I call the nonsense of needing to bring a man with me everywhere before other people listen to what I'm saying...although the Dutchman doesn't ever actually say much, it works).

So I have tried to make a list of things he should know about, but I'm trying to do it without burying him under info. We're still learning as we go, and I've made it clear to him I'm still learning myself: I've done this on my own for so long I just assume some things are normal when they aren't, or forced myself to do things I really shouldn't. I've started with some basics: i.e., filling out the carer forms and making sure he gets his jabs next year, checking for any reliefs we can get on heating in future UsHaus or other bills, how to fill out the Blue Badge forms, I'll teach him how to give my injections...but if anyone can think of other stuff too, that would be good.

He's in it for the long haul, no matter what. I'm blessed beyond measure, so I want to make sure he has the info he needs.

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  • Hi Silvergilt,

    We have a booklet called 'Caring for someone with lupus' which may be of interest. You can read and download it at lupusuk.org.uk/wp-content/u... or if you'd like a physical copy posted to you, please just send me a private message or email paul@lupusuk.org.uk with your name and address.

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