There are the obvious mental issues of Dementia. Depression, Anxiety, Hallucinations, Isolation, and other lesser issues. But, there is also the issue with the individuals will to live. Yes, I think about life and how to live it often. For instance, I know I do my best when I am doing God's work. That is when my mind works the best and I feel my best. Teaching Bible Studies, Preaching, visiting the sick, and just witnessing to others.
But, I also know that I have times when I am not on my game, and not in control of my cognitive abilities. That is when I am at my lowest and when I question everything.
The truth is, I have thought often, recently, about stopping all of the Dementia drugs. Especially after the negative issues with Namenda XR. That was a very low time for me and one full of self doubt and questioning.
I believe all of us dealing with LBD ask ourselves the same questions. We all want to live and be active and connected to life. None of us want to be incapacitated and lost in a world that none else can enter. So, the inner conflict continues and the effects of Dementia continue to confuse my cognitive abilities.
I believe that most people will not openly discuss this topic and I also know my family will not enter into this discussion with me. I understand their position. They love me and want me to be OK. They cannot possibly see my position. I also understand that truth. But, it is something caregivers and LBD patients should discuss, openly. So, I bring this up to al lot you, now.
I will bet, this will make many of you uncomfortable. It makes me uncomfortable. But, it is a fact of this disease. When do we stop medicating ourselves and let the disease take it's course. Especially when we as patients, know things for us are not as good as those on the outside think. For instance, ask my son and wife how I am doing and they will say; very well. My view is not near as good. So, right off the bat, we are at an impasse. And the Neurologist only know what I tell him! So, his view is tainted to begin with. My Psychologist knows better that any other Doctor where I am. And he is very open with my wife as to where I am and what I am dealing with.
Where am I right now. Some days I am good. I am not as cognitively talented and gifted as I once was. My short term memory and executive functions are severely limited. I have problems separating my dream life from my reality. I hallucinate still and my leg pain is increasing. Additionally, I am having difficulty with stability when standing and walking. I am still hard headed and do not use my cane often. It is funny, when I have my cane, I feel much more stable and secure. But, I seldom use it. Like I said, I am hard headed, and a little forgetful.
I have been diminished by the disease and I am frustrated by that. The Dementia drugs are not working as well as they once did. Or more correctly, the disease is more powerful than the drugs. However I put it, I am slowly going down hill. Will that speed up. Only God knows. And he has a perfect plan for that. So, I do not worry. Just the same, I ponder these issues often.
And why not, I have few other things to ponder. More later.