I’ve been putting writing this off for awhile, honestly. It’s not that it’s something I don’t want to talk about, but rather something I’m not sure how to say. About three or four years ago, now, my grandfather was diagnosed with dementia, and my family’s been going through the path of coping with this, and supporting him as the disease plays its course. For those of you who don’t know, dementia is a subset of Alzheimer’s, breaking down core parts of the brain. It effects every part of living in different ways, and as it progresses, a person loses more and more of their independence, abilities, and memories.
I’m not going to go into the medical side of it, because I don’t know a lot about that. I’m 3,000 miles away most of the year, so I’m not the ideal person to be at doctor’s appointments or anything. But that absence means that it doesn’t seem to be very progressive to me; there are large gaps between when I saw my grandfather last and when I see him next, so I see all the progressive changes the disease has brought happen all at once when I go home for a break.
Growing up, my grandfather wasn’t around as much. My grandparents’ house was only 5-10 minutes away, but my grandfather was often abroad for his work. It’s not until he retired that he became a stable fixture in my life, so it’s not until my high school years that I have a lot of memories with him. However, that means he was there as a support for some of the most important changes in my life. He was there when I struggled through high school depression, there when I graduated, the last one to be there to hug me goodbye when I was dropped off at uni freshman year.
At first, I have to admit I just assumed his diagnosis was mild. Everyone around me was freaking out about it, but it didn’t seem like he was really getting that bad. He was still very independent, still doing a lot of the things he normally would, still remembered everyone’s names. It seemed like everyone was overreacting and infantilizing him, and any reactions he had were normal for that.
It was like that for about two years. Even when I was abroad, he seemed completely fine. When he gave up his keys, it wasn’t because he couldn’t drive, it was because he knew if there was an accident, it was diagnosed that he had dementia and that would open him up to liability and legal issues he didn’t want to risk. But then I went away for second semester my junior year, and when I flew home for the summer, it felt like everything had changed.
The downslide came faster then I was expecting. It seemed like he was fine, and then all of the sudden, he wasn’t. At first, it was just being forgetful, not remembering things or mixing up peoples’ names. Then he started shaking, losing a lot of weight. Now, he seems smaller than he used to be, hunched in and shaking. He can’t remember the words for most of what he wants to say, sometimes strings together random sounds in order to try to say it. When you’re with him, you can’t argue with him, even if he’s about to get hurt. He doesn’t understand what you’re getting across, and that makes him frustrated.
It’s scary, seeing him like that, but the biggest toll has probably been on my grandmother. Her coping is to control everything, so there’s no area of home life that hasn’t been affected somehow in response to the dementia. It’s hard, seeing him go downhill like this, knowing there’s nothing I can do to stop it. I hope that one day there will be a cure for this, so other families won’t have to go through this. But I just keep reminding myself that this is my grandfather. He’s still there, he still remembers things from when he was young, is still full of stories to tell.
He’s still my grandfather, and I love him.