Are there any other carers out there who can give me any tips. Thanks.
Hi I'm a carer for my wife who has recently ... - Vasculitis UK
Hi I'm a carer for my wife who has recently been diagnosed with c-ANCA positive vasculitis.
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My hobby is my husband who has GPA(Wegener's). I cannot share his illness but I share everything else about it, making up his medication each week, ordering the necessary pills & potions, looking after the appointments diary which can get busy and generally making sure he doesn't overdue things. He always seems to do too much before giving up, then takes him twice as long to recover. I tell him to do the things he can do and I'll do the other bits even though there's a bit of role reversal in there.
I keep a detailed record of all his appointments, any changes in medication and any changes to his health. When he starts a cough maybe, or when he gets a rash. All the things that when a doctor asks, you have the information available. So often I've found they say, When did such & such occur? and if you don't keep a record, it's difficult to remember what happened when.
There is a lot of information you will get from here but also look at the Vasculitis UK website which you should be able to click on at the top of this page.
Good luck with it all, if you need any info, do come back here.
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I always go to John's appointments with him, two sets of ears and two voices are better than one. We always make a list of questions before we go to the appointments and we keep a sort of diary, not too detailed. I am always aware of any changes in John's health before he is This page from the website might help. vasculitis.org.uk/living-wi...
Best wishes
Susan