When someone asks me how I am doing, I normally say; I am as well as I can be. That, of course, is a lie! But, I understand most folks do not want for know how I really am. First of all, it would take me 15 minutes to give them an update. Second, "How are you doing?" is a question that really does not beg an answer. It is the same as "Hi or Good Morning" Third, people in general are just not that interested in how anyone but themselves, are doing! So, people with long term diseases lie!
But, the truth is, I am doing worse than ever with now expectation of doing any better. Tonight, while we were picking up our dinner, I got extremely agitated and angry. As we walked back to our apartment I told my wife I did not see any improvement from the Namenda XR experiment. For the first time, she agreed! Now, Linda has steadfast hung on to he belief that I was getting better since I was taken off Namenda XR and placed back on Namenda, twice a day. Now, she admits I did not rebound and as I thought, She agrees I will not.
So, as I wrote a while back, this is the new normal. And, it is not a pretty new normal. But, it is the reality of Lewy Body Dementia. And we have had a long run of drugs working and me slowly progressing. Now, she has a grouch, stuck in his past, with a short fuze anger, to deal with! I pity her. Add to the anger and agitation my leg pain and instability issues and we see the future picture.
I really cannot tell most folks the truth. Why? Some say, you don't look sick, or you look like you are doing well. Or other statements of doubt or ,ore directly, calling me a liar. I ask you, since I do not want or solicit sympathy, why would I lie about having this disease? Why would have limited my income potential? Why would I take a big tax hit to move into a continuing care retirement community that does not eve offer assigned parking? And why haven't I punched someone in the nose because I am so angry.
No, I only tell my closest friends the truth. I may never change that policy. But, the time may come when I can no longer maintain my facade.