What Does One Call It?

I like referring to Gregory's dementia in a number of ways.

We were grateful to get an "Alzheimer's" diagnosis from his Neurologist as that helped with winning our disability claims, both with a private company and with Social Security. With most of our doctors and with family and friends it is easier to call it Alzheimer's as most people have more of an idea of what that means. 

I avoid using the term "Dementia" except with doctors and friends who are "in the field." Dementia seems to refer to "something that happens to old people" which Gregory is NOT. Using the term "Dementia" does not begin to suggest the true nature of the difficulties in dealing with the afflicted person on a day to day basis which is usually not at all imagined by others.

Sometimes I refer to it as "Our Situation," or "Our Condition" which emphasizes that it is at least as much of a problem for me (maybe more so) as it is for him. I sometimes refer to it as "The Big 'A.'" 

I find myself replying to people's remarks about their forgetting where they put their keys, etc: "Yes we all have those problems as we get older ... but that is nothing like what Gregory and I are going through." I find it is important to me (and hopefully to others) to respond in this way as it seems that people make "excuses" or try to "relate" as a way of making themselves feel more comfortable with OUR situation and/or to ME make me feel better. Doesn't help!

The more I study the disease, the more I think Gregory's is a Frontotemporal Disorder. There are many types, symptoms, and names for Frontotemporal, the names do not matter. Gregory's symptoms are by now scattered across the various types of the Frontotemportal Disorder labels and descriptions. 

I learned more about this particular dementia in a book I ordered from The National Institute on Aging/National Institute of Health at www.nia.nih.gov/Frontotemporal (or call 800-438-4380.) 

The book was very helpful in helping me understand the more specific changes that are taking place in Gregory and in being supportive of hium as the changes continue, intensify, and/or show up for the first time.