From the Patient

It's interesting to me that finding information about Frontotemporal Dementia (FTD) directly from the patients who have it is hard to find. Part of this might be because a lot with this diagnosis suffer with word problems making communication more difficult, or they are in denial that something is seriously wrong. Who would want to admit that their brain was failing them? I'm sure very few of us would raise our hands! There is also a condition called anosognosia in which the patient lacks an awareness or insight that there is a problem at all.

My husband is in denial quite often about his condition. He tries to "cover" things a lot, speaking in circles or using generalizations to answer a question or confront a problem. He will very, very rarely admit that he has forgotten, got confused, or can't work something out in his head. Today we had a discussion about his anxiety and agitation issues. He told me that he feels that he lives in his own world where his brain tells him things that do not fit with my world. He said it is getting more and more difficult to bring the two together. The things his shrinking brain tell him are false a lot of the time, and he of course feels that they are true. This has to be tremendously hard to deal with mentally. I think this is a big part of the reason he feels the anxiety and stress... stuck somewhere between "normal" brain and "dementia" brain and never being fully in one of them.

I also asked my husband if he felt that he got enough love and affection. He seemed puzzled and said that he doesn't really know what that means anymore. He was having a hard time explaining, but from what I understood it seems that the human need for intimacy and affection is gone, meaning he doesn't need an expression of love any more. With this, of course, it means that he does not show affection to those that he loves. This has been going on for at least a few years. I told him a few months ago that when this life is all said and done, that I needed more love in Heaven because I didn't get enough in this life.

The other thing we discussed today was why he follows me around. He does this often and from what I understand, so do many FTD patients with their spouse or caregivers. Having never fully understood why, I asked him today since he seemed to be willing to talk more candidly. He told me that it's because he never feels safe. I guess, sort of like a child will follow a parent around, he follows me around to feel more secure and safe. This makes sense even if it is hard to deal with sometimes!