Brain disease! If only I had thought of describing it as such back in the early days! Its so true, when you tell people its Alzheimers they usually come back with shock that it has happened to one so young, but then they seem to write it off as not too bad, just forgetfulness and pleasant unawareness of their fate and then, and then (!) they act like you are upset about nothing!! A few years back I switched from calling it Alzheimers and instead started calling it dementia, due to the lack of understanding that would arise as soon as I mentioned the 'A' word! Dementia gets a better response, but brain disease, that would have been even better.
The other day I had a sit down with a new boss, where she told me about her life and I told her about my life and for the first time I felt like I got the description right. I still made the mistake of saying he had been diagnosed with Alzheimers (honesty is so hard to curb sometimes) but this time I explained that it was a 10year process of Dad becoming increasingly brain damaged so that over time he lost both his mental and physical abilities. It was such a relief to have finally made someone understand why it was taking such a toll on me, to be able to explain that I didn't want a high stress job, just wanted to do the work required of me and go home each day.
And its not just about me and wanting people to understand the pain I am dealing with...I want them to respect how hard this is on Dad, respect his life, respect his fighting spirit. For some strange reason Alzheimers is seen as an easy way to go.