Monday, May 27, 2013

Why hasn't anybody written a manual yet?





"I want to go the ocean. I want to drive a car. I want to be with my family. I am walking a fine line between being me and being lost; swept away. I want to go home. Why can't I go home? I will do the laundry and do the dishes and do the cleaning. Why won't you take me home? I can't stand this anymore." Your words were jumbled, your tears and sobs ripped through me, leaving me exposed with tears streaming down my cheeks.

We sit, side by side, shivering with tears and
distress. Confusion straps you in a roller coaster of delusions, magnificent and erratic. And all I can do is comfort you as coherent thoughts fade in and out and you try with all your might to remember, try to reshuffle the cards, spilling them like cards, falling flailing all over the floor; and one by one, your words are gone, your thought a fading memory. Rage follows, intruding in your attempts to remember, then anguish over broken brain circuits, broken dreams, and dead ends.


We have just attended Jack's high school graduation. The crowds made you feel unsafe, lost. You clung to your dad and to me, trying to remember why we were in the gymnasium with people, so many people. Trying to help you find your son, recognize your son, track as your son receives his diploma. You try, and the lights leave your eyes as the fog of this dementia once again forms a wall between you and your life.

You calm, and fall asleep. I continue to weep silently, thinking about the good times, all the dreams we hoped for.  Holding your hand, I watch you sleep, praying for peace but watching you struggle and cry out, "no, no." hands flying in the air as you attempt to fight the dragons in your dreams.

I pray for you. I choke on life cheating you as going on with life, enjoying our boy, laughing, playing, soaking in the warm sun and watching the milky way for hours in the deep of the night. I am so grateful for my life. I am so sorry I can not fix this for you. I hold back bursts of emotions, riding right there on my shirt sleeve because I am afraid of those emotions. They represent a lifetime with you of good and bad. Sometimes they hold me back from healing.

I wish there was a manual for this. I really do. But for now I do the best that I can.