Well, Shut the Door!

Sharon

Well, Shut the Door!

Sharon
door-1106012_640Last night was our FTD chat. It is a chat we all seem to need. This is a complex disease which is rare and makes you feel very lonely and quite confused. We share a lot of the same feelings and concerns.

I still find myself angry about some of Rod's behaviors, especially in the past. The doctors say, "Don't take it personally". That is so easy to say when it is very personal to all of us. Many have had to tolerate much verbal abuse, emotional abuse and sometimes even physical abuse due to this disease. How can you not take that personally? It affects you to your core.

I have figured out why it is so hard to let these things go. THERE IS NO CLOSURE. It sounds so noble to say, blame the disease not the person. Well, it is the same person looking you in the face who has said and done awful things to you with no remorse. If anyone else suffered through these things they would have left, but we family caregivers stay. We are still looking into the face of a person who was, in the past, warm and loving. We live in the roller coaster world of never having closure for bad behaviors. There are no apologies. There are times it feels they play the FTD card. They look and act normal to others. Then suddenly they have an FTD moment and your world is rocked.

Sure, you could get mad back, but that only escalates the whole thing. You could leave, but you know you won't because you know the ending of that would be awful and you would feel guilt. So you bury it, with no closure. There is no door to be shut. How do you move on when that door is left swinging in the breeze?

Someone last night said "If he just LOOKED different, it might help". Yes, that is the hard part. You keep looking at the face you have seen for years, but the words coming out seem alien. The actions are bizarre, but the voice is the same. The body looks the same, but the connection is gone. The worst is that this goes on and on and on, for years. There is no timetable; each case is unique but eerily similar.

None of us signed up for this. We try to live every day to its fullest, but that alien is just lurking under the surface. If we could just slam the door in its face. Living through any disease that robs a person is hard. This one is not only hard but cruel. I worry that I will not be able to stand against this for the time I need. The internal stress is hard to dissipate when you know a shoe is going to fly across the room at some point in time and you will not be able to duck.