Everett Van Horn—a 24-year-old Wilmette resident and product specialist at Epsilon—spoke with Bianca Smith about how his father’s early-onset Alzheimer’s has affected his family since he was diagnosed.
Bianca: When did it first become apparent that your dad had Alzheimer’s?
Everett: Six years ago, we started noticing it. He started forgetting little things, like making poor business decisions. He ran a few car dealerships and he started making a couple of questionable decisions. We didn’t think anything of it until it became more prevalent. Eventually, he went and got checked out and diagnosed a little over a year after that started. He was still very coherent and doing everything on his own. I was a sophomore in college when he told us. Each year after, it’s a pretty rapid decline now.
Bianca: What was going through your mind?
Everett: I didn’t think it would happen as quick as it did so when he said it, I didn’t think it would be like this. It didn’t have as big of an impact as it probably should have.
Bianca: You mentioned this rapid decline—what does that look like?
Everett: He still lives with us. We have a caretaker come every day. I still live at home and my mom works as much as she can—I have a full-time job and my little brother is in college. But we have to wake him up, help him get dressed, make all his food. There’s no sentences or coherent anything really. Language wise, there’s nothing there. He says words and once in a while he’ll point to stuff, but pretty much all sorts of communication are gone. He’s 63.
Right when my brother was going to college—he’s a sophomore now—it started getting bad. We were all working full-time and taking care of him which got pretty difficult. It’s a 24-hour job. It’s a two-person job all the time—for five months he would become violent. That definitely affected us. My dad’s a pretty big person—I could fend him off but my brother was alone with him at one point and he got to my brother and had him pinned down. [My dad] had no idea what he was doing. I don’t want to say that’s when we felt like he wasn’t our dad anymore, but, he wasn’t there in that sense. He doesn’t look like he’s weathered or old in the way that most people think Alzheimer’s looks like. Even at the hospital when we’d have to take him, it’s a different experience.
Bianca: Do you feel isolated or lacking professional support because of that?
Everett: Getting a caregiver was the biggest thing. Now we have personal freedom and we can get work done—actually live somewhat of a life. Hospital wise, you could give [him] as many drugs as you’d want—they weren’t going to find a cure in the next day but they aren’t accustomed to working with someone like [my dad]. I know it’s difficult for them and it’s difficult for us to know how to handle something like that. There are very limited resources when it comes to early onset Alzheimer’s.
After his first really violent outbreak, we took him down to Northwestern and he stayed there for three nights. One night he got violent and they had to drug him. He was hunched over for a week—I understand they were looking out for the safety of others but it just seems like they just don’t have any better ways to handle it.
I’d like to see more people recognizing and talking about it—just understanding what it is. It’s not like somebody with cancer where you see them physically deteriorating but they’re still able to function mentally. I think you have to have a strong family to make it through. We’ve been fortunate enough to have that. My dad’s side of the family is a big family and very supportive. They also have the means to do that as well. But that’s one thing I’ve realized—the medical side of this is crazy. It affects how well someone is treated and can live their life. The financial part of the disease is definitely not talked about.
Bianca: In the scope of how this is going to affect you down the line—is that anything you mull over?
Everett: Once in awhile I’ll think about it. I can easily go get tested to find out, but at this point, I don’t know what I’d do to try and change that. If life becomes more serious—if I wanted to have a family—I don’t know if I’d want to go down that path knowing there’s a great chance I’d develop early onset. I don’t know if I’d want to put my family through that, seeing how it affects our family. I don’t want to sit around and in the back of my head be like, ‘well, fuck.’ I can’t do anything about it. I want to know, but I also want to enjoy my time right now.
Request to have our Flux Issue sent your way here—my quest piece about Alzheimer’s and its fallout will be ready to read in full this June!