Both of my parents died with dementia – my father in 2012, and my mother in 2015. The two people who had loved me so fiercely since the moment of my birth slipped away slowly. First, their personalities became unrecognizable. And then, their bodies gave out.
It was only after they were gone that I began to understand what this had meant to me and my brothers. We had held back two waves of grief as we dealt with the overwhelming challenges of trying to deal with their needs. In my case, there were the additional strain and guilt of doing this while living thousands of miles away.
There are so many things I wish I had done differently. I wish I had been more patient, that I had not let the practical questions — of getting on top of the bank accounts, of coordinating with the doctors, of making sure they had a living situation that was safe, of thinking there was some way of actually finding some control of the situation – get in the way of just appreciating what time I had left with them.
Hearing stories from the nurses was a revelation to me. While I had been focusing on what wasn’t there, they were getting to know what still was.
The last few days, when my mom was in hospice care, turned out to be a blessing I had not anticipated. One by one, the nurses of the community where she had been living would come in and tell me sweet and funny stories about my mother.
It was a revelation to me. While I had been focusing on what wasn’t there, they were getting to know what still was. More than one of them told me that Mom was the only one of the residents in the memory-care unit who would always remember their names. And even invent new names for them. A wonderful nurse named Kenya, for instance, became “Queen Brown Eyes.” And she would call my mom “Queen Blue Eyes.”
Now that they are gone, I am finding another comfort: In my memory, those final painful years are receding and they live as they did when they were young and strong and vigorous. I am getting to know them again. I can tell my own sons stories about them, without feeling my chest seize up.
I miss them. I always will, maybe twice as much because they were taken away from me twice. But it also comes with the recognition that this kind of pain comes only because I had been blessed so completely by having them in my life in the first place.
Karen Tumulty is a political columnist for the Washington Post