I am not a spouse. And yet she comes and speaks to me as if I were. She is missing her husband. She is missing the conversations they’ve had for decades. She is missing making decisions and plans with him. She’s been talking to him for nearly 60 years. He is here. And yet he isn’t.
How do you talk to someone for years and then discover they no longer understand you? He looks at her sometimes with a question mark on his face, trying to comprehend what she is asking him. Sometimes he knows and other times he doesn’t. So she speaks to me by default. I am there. I am a caregiver and I know the burden, albeit in a different way. He is my Father. He is her husband. Our lives center around him and he is grateful.
What is he thinking? Does he want to say something, but get frustrated because he can’t quite find the words? He is always looking for us. Like my niece, when she was adopted from a Russian orphanage as a baby. Always looking for us in the room, making sure we were never out of sight. Sitting down to play but occasionally turning her head, just to check. Now he is the one to turn his head.
He has never been alone, never felt the need to seek out people just to be sure someone is in the room. Until this disease came crashing into his life. It takes so much from him, his ability to communicate with his wife, to make sense of her words. Perhaps he does not like to be left alone with his thoughts, with his fears that he’s forgotten who he is, who we are.
And so, she talks to me. But I don’t respond the way he would, so she gets upset. We get upset a lot. Because nothing about this disease is normal. There is nothing normal about a brain that is slowly dying. Like we are all characters someone has drawn on paper but after the pencil has defined us, the eraser returns to him and begins taking away what was once there, what we’ve always known to be there. After the eraser has passed over him, I look at the remnants, the tiny little pieces that we brush away. Is that where my Father is? Is he being brushed away before my eyes? How can I stop the eraser from taking any more of him? Can I find a way to flip the pencil around so that my Father can be redrawn? Can someone put back what was once there?
I see it in my mind. What used to be there. I see the way he was, and I remember his words. But he’s had this disease for nearly 15 years. Will I forget him? The real him? Like a child forgets the way his mother looks when she’s taken from him and all he has left are pictures. Will my memories of my Father fade?
When a child scatters glue onto a piece of paper and then covers the glue with glitter, whatever doesn’t stick is discarded. We don’t look at what was thrown away. We look at what’s left. Has part of my Father been thrown away? I am truly grateful for what is still there, but will I remember what is now gone?
How can a disease erase a person, like a dream that fades in the morning or the steam that rises from your cup? I don’t understand. I don’t think I ever will. I just want the glitter back. Everything that’s been discarded, everything that didn’t stick to the glue, but was shaken from the page. Shaken from him.
Perhaps this is what my grandfather felt when this disease took so much from my grandmother that she could no longer be cared for at home. Just one more day, he kept praying. Just one more day to have her back. He never got that day, not on earth. And then he got everything. He got all of her in heaven, the glue and all the glitter. I guess that’s where I’ll get all of my Father.
So for now, I’ll keep writing about the glitter, what I can still see and anything I remember about what is no longer there. I’ll keep writing. And crying and praying and hoping and believing that all will be restored to him and one day he will be made whole.
This is so much bigger than me. This is not just one person. This is millions of people all over the world. So, I know the answer has to be so much bigger too. So big I cannot fathom, so big I cannot comprehend. The answer is good. And by its very nature of being bigger than the disease, it will prevail. It must.