Bel
I know EXACTLY how you are feeling - it feels somehow deceitful to do that, talk about someone when they are not around. But think of it this way... If you were the mother of a 6 year old going to the doctor, you'd be the one to do all the talking about the symptoms, and your concerns etc, rather than leaving it to the child. I understand, of course, that your case is different to mine, but I know the docs would not get a full understanding if they only talked to Ron ( also FTD) as he can't really assess what is wrong with him, and of course can't remember the little incidents which happened which caused me concern.
For me there are so many things that are awful about this disease, the uncertainty, and the series of never-ending losses make it so difficult. I was at a care giver conference yesterday and learned about "anticipatory grief", and also how, with dementia, the loved one starts grieving from the time of onset right to death, it is a very dragged out process.