I have tried to describe my feelings throughout this blog. Now, a new emotion is beginning to develop and it should be discussed. There is a movie that Linda and I have watched a couple of times that I recommend for anyone with or caring for someone with any dementia. The title is "Safe House" with Patrick Stewart. The premise is that the main character is progressing through the journey of a dementia. He was a secret operative and has secrets that could cause him to be killed. At first, his children think he is paranoid because of his dementia. Of course, he knows different. He tries to keep his mind working through memory games and security drills ran buy his good friend. In the end, he realizes he can no longer defend himself!
That realization that the person with dementia can no longer provide for himself is the inner terror! Like the character in the movie, I was self reliant. Able to handle any situation. Self assured. A career Navy Master Chief Gunner's Mate that dealt with life and death decisions in gun mounts! My word was law in those gun mounts and on the ships in the ordnance areas. I had good judgement and I was sought out for special assignments that were dangerous, complicated, and that had severe consequences.
Now, people even doubt me when I describe my disease. I can see it in their faces. I feel less and less comfortable driving, and decisions are made by others. What I feared has come to be. Sometimes, I want to curl up in a safe room, locked in, where no one can get to me. I long to be able to control my environment, what I experience, and who I let in.
I am better when I am with my wife or my son. But even then, I realize I am not the protector that I once was. When I am alone, I will not leave the house or open the door. I keep the telephone close at all times and I am wary of any sound. My trusty poodles keep watch, alerting at any noise.
Much like the main character in the movie, I tried to play memory games to prove to myself that my memory was fine. But they only reinforce the fact that I cannot remember things. Even my deeply engraved old Navy memories are fading. The MK 42 gun mount that I loved so much and knew so much about is fading from memory. Last night, before I went to sleep, I was trying to remember the sequence of operation of that gun mount. I couldn't. For me, that is the sign of problems.
This inner fear, even terror, is felt, by ever dementia patient. The world around us becomes a place to fear. People are all strangers, places are all new, situations are all threatening. I long to see familiar faces, but I seldom do. I long to do familiar things, but people who say they will go with me to do those things don't. They have work, family, chores, and issues of their own. It amazes me that people that I know, even relatives, go to great extremes not to see me or be with me. It is as if they think I am contagious!
Soon, like the character in the movie, I will give in to the fact that I can no longer do for myself. That I am totally dependent on others. But for now, I will cling to any independence that I can. Trying to remain in the normal world, as the unfamiliar world closes in on me.
This is a terrifying disease.