I took OH with me to a reunion of 'girls who worked for me over 30yrs ago, all of whom knew him - some much to chat and laugh about, we had a really good long lunch. He always seems to come across as more 'normal' and able when we go out and also when he sees his siblings so I get him out to a restaurant with his sisters every week.
However I find it very frustrating that no one really understands what happens behind closed doors when we get back home and all the things I need to do for him (including all those things which you don't discuss in public) and his actual mental state - he is in a wheelchair and has no balance or coodination meaning that he's only just about able to feed himself, can't use the phone or even a tv zapper and his mind drifts off. Everyone is so full of ideas as to how to occupy him and I am sure they don't believe me when I say he's not able to concentrate etc. and they think I'm restricting him or haven't even thought of the things they are suggesting.
He has carers come morning and night to get him up and back to bed and the local services have been so forthcoming with home equipment (hoists etc.)
and visits but they are the only ones who really know .............
However I find it very frustrating that no one really understands what happens behind closed doors when we get back home and all the things I need to do for him (including all those things which you don't discuss in public) and his actual mental state - he is in a wheelchair and has no balance or coodination meaning that he's only just about able to feed himself, can't use the phone or even a tv zapper and his mind drifts off. Everyone is so full of ideas as to how to occupy him and I am sure they don't believe me when I say he's not able to concentrate etc. and they think I'm restricting him or haven't even thought of the things they are suggesting.
He has carers come morning and night to get him up and back to bed and the local services have been so forthcoming with home equipment (hoists etc.)
and visits but they are the only ones who really know .............