On Saturday I went into the city to a "Meet and Greet" for people (caregivers, friends and family) affected by FTD (Frontotemporal Demetia- the disease which the doctors have apprehensively assigned to the husband). Interesting that one of the more typical symptoms, because it can affect people in slightly different ways, is a total lack of self awareness, which really rears it's head as the sufferers being incapable of understanding that they themselves have this (or any) disease. Two women brought their husbands, one who was newly diagnosed and one who was diagnosed 9 years ago. The one with the almost decade long ride in FTD hell, mostly sat placidly with a glazed (another symptom of the later stages) expression listening to the conversation. He understood the room was gathered to discuss FTD and leaned over to his wife and whispered "Which one of us has FTD?"
My husband, also finds it incomprehensible that he has a diseased brain but instead of sitting and cooperating he is going down a more irritated road, one on which he has decided that I have created this imagined diagnosis because I am cruelly wishing him to die. Naturally, he thinks he is going to live forever. When I got back from the meeting the husband, in his "You are such a joke" voice, asked me if I was successful (wink wink) in convincing a room full of strangers that he has FTD.
It's like living in One Flew Over the Cuckoos Nest and the husband plays multiple characters. This shit could drive a girl over the edge, because in his alternate reality he is so assured of what he believes that I end up asking myself AM I THE CRAZY ONE? Then I remember that the crazy people do not question their sanity- only the sane people do and I'm steady for a while.
At the meet and greet I met a woman whose husband is going through this disease the exact same way the husband is. That was reassuring because it seemed that no one was questioning her husband's diagnosis. (I suppose the one who is questioning my husband's diagnosis is him... so really ... but still... these things wear a girl down) Don't get me wrong, I do not want to be in this club, I do not want to be in any club which ends in miserable death and requires a support group, and most of all I spurn any role which requires me to be the nurse. Seriously, I only have so much of that in the reserves. I guess I take after my mother more than I realized!
Did I ever mention how when my kids were 2,6 and 10 and I got out of the hospital still sick with double pneumonia lil sis had to guilt our mother into flying in to take care of me and after two days she said I was fine and tried to schedule her flight back because she said my dad needed her more than I did? I begged her not to leave and she only stayed one extra day. My guess is that there was a party she didn't want to miss. Or maybe something even more important like a manicure. (Guess who rocks at holding onto resentment even after people are dead for 8 years!) I feel like my mom. I want to get on a plane and go to a party or maybe have a manicure.
Sometimes when I fill up the gas tank I think of just how blissfully far away I could be from here on one tank of gas.