I was diagnosed with Alzheimer’s disease two years ago. It was the scariest day of my life. Well, until it wasn’t. Then the scariest day of my life was the day I couldn’t remember the name of my hair stylist, who I’ve been going to for 15 years. After that, the scariest day of my life was when I couldn’t remember my recipe for homemade brownies, the ones I’ve made so many times I can’t even begin to count. The ones I’ve known the recipe by heart for as long as I’ve been baking. Then the scariest day of my life was when I was in my car, driving home from the grocery store and realized I didn’t know where I was or how to get home. And finally, most recently, the scariest day of my life was yesterday, when I sat down to write this and I couldn’t form any of the words I wanted to use.
It comes and goes of course. I have good days, when memory loss seems a silly (albeit terrifying) joke. I have days when I remember everything and I’m completely self-sufficient and I wonder if maybe they misdiagnosed me all those months ago. I secretly hoard this hope and pray that it might be true.
But then I have days where I can’t remember so many things. And unfortunately, those things are becoming more and more significant. Who cares if I can’t remember the name of that band I loved in high school? Everyone forgets those things, right? But forgetting my husband’s birthday? Or the middle names of my grandkids? Or worse, how to get to my grandkids’ houses? Well, that doesn’t seem right.
It seems like I live in a perpetual state of anxiety. I’m always waiting to not remember something quite right. Every time I get in the car (since the grocery store incident), I wonder if I’ll find my way back home or if I’ll end up somewhere completely unknown. Alzheimer’s disease has been trying to steal my joy from day one. It feels like I’m fighting every day to win that battle.
My husband asked me the other day what it was like. He wanted me to talk it through with him, so he could know what it was like to live in my head. I told him, here are some things I want you to know:
I want you to know that I’m still me. It seems like I’m becoming someone different. I know I’m cranky and forgetful and sometimes you look at me like you have lost the wife you’ve loved so dearly for 40 years. But I’m still here. Underneath all the missing brain matter and confused speech and angry shouts, the woman you love is still here.
I want you to know that every day is a fight. I’m exhausted and anxious and fearful of the future. I want to just go about my normal routine, but it’s so much more tiring these days.
I want you to know that I still want to laugh and rehash sweet memories. Dementia hasn’t taken away my ability to sing a good song or look at old pictures. Sit with me and remember with me. Laugh with me. Let’s find pockets of time to still be us. To still be happy.
And I want you to know that no matter who I become through all of this, I loved (and will always love) you fiercely. You and the children were everything to me, every day of my life. I may forget you (God help me), but know that my heart will always know you. Until the day that I die.