My Mother Has Alzheimer’s and I’m Terrified That Someday I Will Too

In 2012, my mom was diagnosed with Alzheimer’s disease. She was sixty.

I say diagnosed because people understand that, they get that. But Alzheimer’s is not a disease that there is a simple test for, instead it is complex, easily mistaken for other neural disorders and can only be absolutely identified after death. All of those things aside, I was pretty certain of what the doctor would say – more than a year before she ever made an appointment. Her behavior and forgetfulness was familiar to me because my maternal grandmother had the same disease. That is probably why it took Mom so long to speak to a medical professional about the possibility. She had watched a person she loved and respected deteriorate into someone who did not recognize the people around her. There are few things scarier than that. Except, perhaps, confirming that it will happen to you.

Alzheimer’s is a terrifying disease, not just because patients forget faces and names, but because they forget where they are. When they are. Their place in the world. Themselves.

My mother has always been a vibrant personality and voracious learner. As a child, she would push the dirty supper dishes to the side of the table because we had decided on the spur of the moment to sew a dress. In the middle of the afternoon on a July day she would bake in our un-air-conditioned kitchen – because the church ladies were short a dessert for the salad supper. One of my fondest memories was of waking up early on a Saturday morning, after my dad had gone to work, and snuggling into bed with her to read. She fostered my love of reading, which lead to my love of writing.

My mom turned sixty-four this year. She has good days and bad days. She takes a mood enhancer, which is common for Alzheimer’s patients to deal with what they are losing. She seems, for the most part, happy. She doesn’t sew anymore, because the patterns are difficult for her to understand and she got rid of her machine when she could no longer figure out how to thread it. My dad does most of the cooking now, which translates to a lot of fried egg sandwiches and pancakes, I’m sure. She can’t keep track of where she is in a recipe, or if the oven is on. Mom doesn’t read anymore. Following plot lines, even over the course of a few hours, is no longer in her capacity. She gets nervous if she can’t see my dad. He is her touchstone now, the thing that keeps her from worrying if she has forgotten where she needs to be. What she should be wearing. If she showered that morning.

She still remembers her family. Myself, my husband, my two kids. All three of my siblings, their spouses, their children. Even my niece who was born after mom was diagnosed. She can be funny about it too, often filching an extra cookie or glass of wine. When we remind her she already had one, she will brush it off, saying “well if I can’t remember it, I must need another.” She’ll laugh then.

Mom lives closer to my siblings, and I don’t see her as often as they do. It’s hard, to be with her. Not once in the last two years has she not greeted me by telling me how old I look. For her, I’m still in my twenties and shouldn’t have wrinkles or grey hairs.

It’s hard, because after she was diagnosed, I had a genetic test done. I carry the markers for Alzheimer’s disease. The average American has a 7% chance of developing it before age 80. I have a 40% chance. I have never been so scared.

They have hope. I am young, healthy, and aware of the possibilities ahead of me. At thirty-four I have a living will, a standing annual doctor’s appointment, and a desire to go after my passions. There may come a day when I can’t write words like this. When I can’t read them. But that day is not here yet.

I have shared my genetic results, so that they can be used by researchers who are studying Alzheimer’s and other inherited diseases. I have encouraged my siblings and family members to do the same. There are exciting possibilities out there that could stop the progression of neural deterioration, or even reverse it. By the time I am sixty, Alzheimer’s may be a minor inconvenience. Until that future comes into being, I keep reminding myself to take risks, to do the things that I love. To give my children memories of who I am and how much I love them. Spending time with my mother, even if I have to force myself to do it, because I want any new memories she can still make to be good ones.

Fear pushes us to do amazing, powerful, brave things. Sometimes that means just living life intentionally.