My family knew something was wrong before I did. I was living overseas and my contact with my mom was by telephone and mail. Mom came to visit twice in a period of four years and I could see such a change in her. She repeated herself more often, asked the same questions over and over, was fixated on the smallest of details. But my mom was too young to be too sick.
I moved back to Iowa in 1998 and we knew that it was dementia that had taken hold of my mom. For two years, I lived in Cedar Rapids and did not see a dramatic decline. Once I moved to West Des Moines and saw her much less frequently, the decline was much more noticeable. And as dementia took a tighter grip, Mom became harder to travel with so my dad didn't bring her to our house. And with three kids in three activities, we didn't make it to his house nearly enough.
When we did see her, she would confuse Ashlyn or Hayley for me. We didn't mind. Everyone did the best they could with a situation that was never going to be easy. The kids had a lot of patience, some fear. I had a lot of fear and some patience. There were times when I so desperately needed my mom and she wasn't really there. There is no getting around that, it hurts, it frustrates, it angers.
Fast forward a few years. I had grown accustom to Mom not recognizing me or calling me by the wrong name. It was common and it was expected. I would tell her who I was, there would be a flash of understanding in her eyes and we would move on from there. She would tap her fingers and sing her children's names. Bobby, Crissy, Dicky, Sheila, Annie. I was the pinkie.
So there we were, at my sister's wedding, June 19, 2004. Sheila, my mom and I were standing on the driveway talking. And Mom asks Sheila who I was. "Annie" Sheila says. Everyone in Cedar Rapids calls me Annie. And Sheila sees it in Mom's eyes, that lack of connection. So Sheila adds, "your youngest daughter." and there is a nervous laugh to Sheila's words. I see it in Mom's eyes, blankness, then confusion, and then blankness again. I was gone. The path that took my mom to me inside her mind was gone. And it didn't matter if I was still in there somewhere because she was never going to find me again. I knew that.
Prior to that moment, I knew that I could lead, prod, cajole my mom into knowing me. After that moment, I knew, really knew that I was gone from her. I will tell you that there were no words empty enough to describe that emotion. There were no words to ease the sorrow. There was nothing that could make me feel okay.
When my mom died 18 months later, joy overwhelmed me. She knew again and she knew me without anyone holding her hand, leading her through the family connections. I was hers again, completely. And she was mine again, to confer with, seek wisdom from, be loved by.
I cannot tell you what it was like for my dad or my siblings. I don't know how any other family deals with such a disease. I don't dwell on the way I may have been judged for not being present more often, for not being patient enough, for not being a better daughter. Dementia is very good at making it very difficult for everyone.
As much as I would rather have a living, breathing, knowing mom here with me today, that was not meant to be. So I must continue to find the joy in knowing that she can call each of her children by name without a song to help her along. Now, she can see me with clear eyes that will know me immediately. My sorrow is eased by the joy I have knowing that she is ever present now. There is no confusion, anxtiety or frustration in her any longer, just joy.
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