Catch 22

Things seem to be getting better for Dad. I think the Namenda is finally kicking in coupled with a reduction in his daily Sinemet. He’s not experiencing hallucinations anymore which is great and he seems to be more cognizant and a bit like his old self. He’s now able to remember and fully recite his prayers at night which I believe is quite comforting to him. Today he went to Costco with us and the past few nights he’s been able to walk the dog. It’s great to see him up and functioning, again.

The only downside to his improvement is that he still sleeps the majority of the day. Often times he can easily sleep 15 hours or more, however, he’s very alert and active when he finally rises for the day. If we try to wake him early, he just does not have a good day and it ends in him begging to go back to bed. Generally, if he gets his desired amount of sleep, we don’t have to fight to get him out of bed and dressed. He’ll even have a good appetite. I mean, he’s not completely like his old self and in many ways, it’s still like caring for a kid. He’s dependent on us for his daily care but he’s definitely engaged in every day activities, able to focus, think and speak clearly. Who knows, this could all be part of the Lewy rollercoaster and next week we could be back to square one. Maybe, just maybe, we are getting his medication regiment under control? I don’t want to jinx it but it’s really quite lovely to see Dad getting back to being Dad, again.

However, with the upswing in his health and behavior comes a bit of a catch 22 situation. Now that he is more alert, he is more aware of his declining health. When he was “bad” it was never an issue. I think Dad is slowly realizing that something is wrong but he’s still in denial about having Lewy Body Disease. He thinks it’s “B-S.” We talk about his Parkinsonism- the trembling limbs, shuffling gait, stooped posture. For Dad, he sort of realizes that he must have something like it as there is no denying his shaking hands. Since he is understandably sensitive about his condition, we don’t really say the words, ‘Lewy Bod Dementia.’ It’s not that we’re trying to hide anything; it’s just that words like ‘Alzheimers’ and ‘Dementia’ are powerful and devastating words. To someone in a weakened mental and physical state, hearing them over and over can really do in one’s psyche. I always refer to Lewy Body Dementia as Lewy Body Disease or rather, LBD. Often times I don’t even really mention any of it in front of him. We’ve tried talking about it with him on several occasion and the doctors have mentioned it to him as well but he just doesn’t get it… or refuses to get it. As he says, “I’m not sick… that’s B-S.” To some degree it’s better this way because I think when he finally does come to grips with his reality, it will be absolutely devastating and I wonder about the affect it will have on his will to live.

Since Dad is quicker on the up take these days, I think he’s starting to remember the names of his medications. For instance, he’s taking Aricept which treats Alzheimer’s symptoms. During dinner, Dad overheard the Aricept commercial running on the TV in the background. The commerical talks about alzheimers over and over again. Well, Dad heard that word, stopped eating, turned around and watched the commercial. Mom and I both looked at each other and my heart sank. I know he knows and I think he’s dealing with it in his own way. He never discusses it with us or with his doctors. Since Dad seems to be getting better maybe that will change and we’ll figure out how to deal with it together.