Same with the word carer, I do not see myself as a his carer, however I do use it to stress what I do, I will use 24/7 carer to get the help my husband needs. Sometimes his looks are deceiving, he has a big happy open face and a small shrunken one. Not even sure if that is true but it is how I perceive him, his emotions and mood.
When I talk on the phone and I know I will use these words, I tell him and apologise but say I am just trying to get the help he/we/I need. He accepts this. I can seldom phone out of his earshot, I would if I could.
When I can talk to someone, if I feel they are listening I do try to educate, erase the false ideas. I try to explain the affects depend on the type and also the area of the brain damaged affects behaviour and outcome etc.
Horses for courses.
I do not moan but point out the positives. E.g we are lucky because it has nor affected etc. etc.
My grandmother had a series of strokes in the sixties, we were close, she used to call me by the wrong name. The word dementia was never used.
I am wary of labels, people are so different. I feel labels confine people to a role and they play it out subconsciously. Tell a child they are helpful and they become more so, naughty children are the same.
Labels seem to give permission.
Sometimes I just try to blind them with science to stop unwanted, impractical and ill informed advice!
Other times I just want to curl up and weep.
I do feel for you, we are both juggling with too many balls! Xxx