The Blank Stare of FXTAS

The very worst of all the horrendous symptoms of Vince's FXTAS condition is the blank stare I see too often on his face. I've gotten used to it to some extent, but sometimes it can upset me as much as it did when it first started replacing his former, healthy face several years ago.


At least I know what it is now. In the first years of our marriage, Vince would sometimes just stare at the TV (or straight ahead when I shut off the TV) when I was talking to him. I had no idea his mind was falling apart, and I was quite upset by the apathetic attitute he developed in the first year of our marriage, and probably earlier as I now look back with my knowledge of FXTAS. He's just apathetic because his brain doesn't work.


Now, he just stares straight ahead pretty much all the time. Once in a while, he speaks a little, thankfully says he loves me, and looks sort of alert; but mostly it's that horrible vacant stare which reflects the empty space in his atrophied brain.


I can get really, really frustrated when I ask the simplest of questions, like "Are you hungry? Are you thirsty?" and he just stares and says nothing. I look for the slightest nod or shaking of his head which will sometimes be the only answer I get - if I'm lucky!


Probably the majority of married women complain about their husbands' occasional lack of attention to them and their emotional distance. Maybe if they spent a day in my house, they would learn to be grateful for what they had. On the other hand, if I spent a day with a woman whose husband was paralyzed and connected to tubes, I'd probably be grateful for what I had!


For the past couple of years, I have learned to better cope with the FXTAS in our life, but I do have depressions which arise every now and then - it IS depressing, isn't it?, to be married to a man who rarely talks, aside from not being able to walk or do anything else for himself. The depression just creeps up on me, especially if I have not been out of the house enough - between Vince's blank stare and my very lethargic home health aides being an almost constant fixture in my house, I think it's more surprising that there are days when I am NOT depressed!


But, on the good side, Vince's blankness brings with it a quiet contentment on his part. He does not get angry or anxious like some people with FXTAS or other forms of dementia. Dementia - how I hate that word - maybe instead of dementia (which sounds like "demented" and has nasty connotations) we can call it. . . . . . . .hmm. . . . . .brain-on-permanent-vacation?. . . . . . . .