living with

My Life Watching My Own Dementia Set In

Photo: Bombaert Patrick/Getty Images

Julie Burger, 78, was diagnosed with Alzheimer’s disease in 2016.

In the beginning, the frustration was that I couldn’t find things. And I’m not talking about an hour later or something like that — I couldn’t find things one minute after I knew where they were. The forgetting was the worst for me, because I used to have a photographic memory.
My friends used to say in high school they hated me because I never had to study. I would just flip through the book and that was it. One of the first things that went was my photographic memory ability.

It took me about a year or more, as I realized I was experiencing significant memory and cognitive issues, to tell my husband. I thought I would be able to conquer it on my own. I was really good about hiding it. I couldn’t remember an entire book, but I could remember enough to be able to carry on a conversation — it wasn’t that I was forgetting minor words or anything like that. A lot of the stuff I was losing at first was esoteric stuff. I used to do calculus in my head and I couldn’t do that anymore, but I could add. The other thing I’ve lost, and this is just recently — I used to be able to play the piano, and I can’t play the piano anymore. I can’t read the music.

I know that I’m declining. Previously you could not be diagnosed with Alzheimer’s until you died and then they did an autopsy on your brain so they could see all the plaque. That has changed, so I know I have Alzheimer’s. I know how many more words I forget, the speed at which I’m forgetting. Now that I have a baseline, I get a test every year to see how much I’ve declined, so I know that in actual figures. I started out with a score of 28. The next one that I had I’m down to a 19. I haven’t done this year’s test yet to see, I’m hoping that it stayed the same, but who knows.

It’s extremely frustrating to me that I can’t read a novel. I now have a subscription to Reader’s Digest. That’s all one-page stories, and I can handle one-page stories. It’s when I have to maintain what I read on this page to the next page that I can’t. Anything I read, when I have to put it down and go away and then come back and try to remember, I can’t. And I read newspapers faithfully. I don’t have to carry that over to the next day. I can’t say that I remember what it was, but at the time that I’m reading I enjoy it.

I do a lot of crossword puzzles. And I play games on the computer. I love Words With Friends. I’m currently playing with 82 people simultaneously. The other thing I keep up to date is my reflexes — that has to do with driving and stuff. There’s a game on the computer called Zuma, and it’s a great game if you want to keep your reflexes sharp, so I do that to.

I offered to take a driver’s test. I wanted to make sure I could drive, and I didn’t want to be driving out there if it’s dangerous for me, which I understand happens. I used to be a race car driver in my youth, so I was very pleased that not only did I pass the test, but I scored the highest test they ever had.

Not being able to drive would be a biggie, because I love driving — especially being a race car driver. That was me, that embodied what I did. That’s what I took pride in. I used to be able to drive cross country without any problem. I wouldn’t dare do that now. [But] I’m very comfortable driving. And nowadays with GPS, who gets lost? I don’t drive at night, especially in places I’m not familiar with. And I have wonderful friends that pick me up if there is something going on.

But it’s crazy the things you forget — I can’t remember how you put the gas into the car. I made a little note to myself that I put on the dash about how to open the pump.

In the beginning I felt that [my husband] Les was being overprotective. And I know that he does that because he loves me. But that’s one of the things we talked about, is that he can’t just make a decision on his own. We never did that before in our marriage, so what does that say that he would do that to me now? At this point I am able to take care of myself, and I like to be independent. And we sit down and talk about it and I try to make him understand what I’m feeling when he does that, and that I still have those kinds of abilities. We came to an understanding. But I am psychologically working up to that point, because I know this is not going to go on forever.

Simple things people take for granted that I can no longer do. For example, I had to give up taking care of my own finances. I was quite capable of doing that before — we kept separate checking accounts and all of that. I forgot how to make out checks in my checkbook, and I’ve been doing that for 70 years. In fact, I was scammed — that’s another story. I was fuming, that someone could put that over on me when I thought I did everything correctly. So I turned over all of my financials to Les. Now I don’t have any worry over that and I still feel like I have some control. And when I wake up in the morning, I don’t know if it’s morning or if it’s nighttime, so that’s when I have to go to Google to find out.

I have to admit I have not told my mother. We just helped her celebrate her 102nd birthday. She is having such a wonderful life, why do I have to burden her with that? If it comes time when I really get into the dementia stage, I will tell her and I know that she will understand, because she’s taken care of parents that went through it. [Otherwise,] I tell anybody and everybody — if they truly are your friends, they will understand if you forget their names or if you don’t remember things that you did with them.

I’ve been accepted into a clinical trial and I’m looking forward to that. The trial is not for a cure, because they haven’t found that at all, but it’s for trying to stop the progress of the disease. I know I will never be the person I was before. We take it one step at a time. I don’t just sit home feeling sorry for myself. I enjoy being with people. So that’s where I’m at now. I don’t think I’m a different person, I just have different capabilities.

My Life Watching My Own Dementia Set In