Amy thanks for that excerpt from the Reader's Digest story...makes me feel more sure that I am not imagining that Dad is still there.
Like many on here have said about their loved ones, Dad is still very much Dad to me. I think it even goes deeper than personality, or at least some definitions of personality because Dad was a lot more angry and impatient before he had this disease even though at the same time he was a lot less self centred (not referring to him being mean, but he's not so aware/concerned about others like the old Dad would have been, somewhat like a child or baby).
Dad has a habit lately of staring into my eyes...and I can't think of any reason why he would do that except to be telling me that he is still there, so I tell him that I know he is (he can't verbally express himself but appears to understand me sometimes).
My step-daughter said something sweet (and somewhat blunt as children do) to me the other day too, she said to me 'You know Natalie, even tho your Dad is not his old self, y'know he's not all there in the head...I like him.' And I thought to myself...thats because he's Dad, he's still Dad.
One of the new staff at Dad's home asked me the other day too if I understood what Dad says (he doesn't say words but makes noises as if he were talking) as I appeared to be having conversations with him to her. So I told her, that no i didn't understand what he says, but I base my responses to his sounds on my knowledge of who he is, what he would be likely asking me, and I do point out to him time and time again that I apologise if I am misunderstanding him because we don't use words anymore, but that I do my best to guess what he is saying. I said to her that Dad and I never used to need words to understand each other, so we don't need them now either.
On that I think I am lucky in a way. I often bemoan the fact that Dad can't talk and am so envious of other people who's sufferer can still talk to them...but in ways I think the fact that Dad can't talk allows us to communicate with each other on a deeper level, allows me to be able to sense his soul without distractions caused by confused words.
Last but not least on care homes and not visiting. I think some people just can't, my sister can't and I can understand that..it hurts her too much. I do believe tho that if I stopped visiting my Dad he wouldnt die of the disease, he would die of heartbreak or because there was no point for him to keep going on, and I cannot live with that, or he wouldn't die because he's such a strong fighter and then he would just be alone fighting this disease...and I can't live with that thought either! We will fight this together he and I, until the bitter end...most days we aren't even fighting it, we are just enjoying each others company! I've seen how his home treats him when I am not there, and its not that they treat him badly, but they just don't and probably can't care as much as I do. They don't know who he was before, they can't empathise about how the old Dad would feel about the way he is treated by them, some of them think it would be kinder to hasten his death I am sure and that sentiment well intentioned as it is interferes with the standard of their care. They think they know him, but they don't know the real him. Also I find that because I show such devotion to him they assume he must have been great before the disease, that he must have been a very good man, and so they treat him better than they do others that no one seems to care about. Of course they are also aware that I will complain if their care levels are too low.
Thanks to my visiting the Dadness of Dad, is recognised as being real to the staff at his home and I don't let them forget it for very long.