A lot of people don’t believe I have Alzheimer’s. I’m 55, I’m healthy and I’m articulate. But I fight dementia every day.
I was diagnosed with early-onset Alzheimer’s in May of 2016. Before that, I was an analyst at a company that manages retirement plans. My boss had called me in to say that my work had been slipping. My cubicle was covered with Post-it notes. I was masking my problems, but I couldn’t keep up.
I can feel my brain deteriorating. It’s getting worse week by week. If you asked me what I did three hours ago, I couldn’t tell you. I blank out all the time. I smell chemicals that aren’t there. My vision is dimming. I can’t focus or concentrate. I get angry easier than I used to.
I have to go out to the car four times before I have everything I need. I thought it would be a good idea to put a list of reminders on the door to the garage, but I keep forgetting to make the list. I put a magnet on the door but that’s as far as I got.
I live with my fiancee, my two daughters and my two dogs in Raleigh, N.C. My fiancée and I have been together a long time, since before the diagnosis. She’s been through every stage of grief. We’ve had a lot of heart-to-hearts that lead to tears.
Many people lose everything financially because of this disease. I don’t want that to happen to her. I told her that when the time comes, I want to go off on my own so she won’t have to take care of me. I’ll exit stage left.
When I was diagnosed, I didn’t know anything about dementia. It was a surreal thing to hear. Now I’m committed to spreading awareness. I share my story on my blog, WithAlzmyheart.com. And I just went to Washington, D.C., to advocate for the Alzheimer’s Assn. I got to talk with a senator and a congressman face-to-face. They were so polite and kind, but I was too muddled to say much.
When I went to D.C., I had to be honest with my fiancee. I told her: You are going to be out of sight, out of mind. Don’t expect any phone calls or texts because I won’t remember you exist. I did call her once. That’s because I saw her face while I was scrolling through my phone.
I figure I have four or five years left to still be who I am. If it was 10 years, I could look forward to grandchildren. But I can’t do that. I’ll still be alive in 10 years, but I won’t be myself.
I don’t use Post-it notes anymore. I’d forget to look at them.
— As told to Chris Woolston