You said it perfectly...early and mid stages are difficult, but eventually you look back on them as being the good old days. Right now we are in the mid stages and I feel so guilty for the times I get frustrated or lose my temper because I know I am living my future good old days. I don't want to waste them with the pettiness of frustration, but it is so difficult to find the happiness in our everyday life when it is so filled with stress and never knowing what he is going to do next...or not remember. There is so much he can still do, but there are so many days where his depression is so dibilitating and his memory is so fragmented and that is what that day is all about. It revolves around me trying to help him, motivate him, turn him around, support and love him. I want to enjoy our time together, but it is just this scenario that scares me for the future. I am having such a hard time living in my future good old days, how am I going make it when our future will be so much worse?
Denial. Early on, the symptoms were mild enough that I could explain them away and make excuses. I tend toward the dramatic sometimes; maybe I was making this all up because my life was so bland. I had no perspective and mild things seemed huge. I've told myself that I was passed that. But, you know what? Each time something from outside comes up, I panic. Social Security contacts the neurologist or the Long Term Disability company asks for complete records and updates. What if he doesn't "pass" their tests? We're getting by and he's really pretty easy going, passive actually. I live with him day to day and since diagnosis, life has become incredibly boring. We moved here to escape the craziness of Northern Virginia and to be near family. I work, he's at home. He's bored, of course. He forgets things. Like the date. Or, maybe our phone number or address. Or the city we live in or the name of the street outside the neurologists office. But, he's never been a big guy for remembering minutia and with programming, who knows their own phone numbers anymore? We gave his car to our daughter who "desperately needed our help -wink, wink" so I could keep him from traveling around while I was at work. Those things that started it all, not being able to remember or not being able to fix things anymore could be due to any number of things, right? Four years later, he still has those same problems, just more frequently and in simpler ways. Could it be that I'm imagining these things and they aren't really real?
This week, he went to the neurologist. Couldn't draw the two pentagons intersected. Or the clock. I watched and I knew, but it still seems unreal. I feel that I'm working this all alone and once in awhile, someone else verifies my beliefs. This week the neurologist did. Then he told husband that he couldn't drive anymore. I guess that should be proof enough. Somehow, it's not. Will it take bathroom accidents to convince me? This entry is very hard to write. Usually words flow for me and yet I can't seem to describe this adequately. He can't count money and he can't tell time. He has trouble only occasionally with finding words. No sundowning or rages, but he does walk behind me. He turned the oven on to 500 degrees to keep the house warm because he doesn't understand how to work the thermostat. He was a nuclear engineer. I feel like I have to keep a list of his failures handy so I can do reality checks. I'm sad and lonely. He doesn't enjoy anything, but he doesn't complain. We don't even vacation because it's worse than staying home when we go somewhere and he doesn't seem happy or glad or relaxed or anything different. Always it's just quiet and subdued and a-lone-ly.