As some of you know, my father has been suffering from frontotemporal dementia, a form of early-onset Alzheimer’s, for the last 15 years. Our family has not shared much of this journey, but our close friends and family have gotten reports from us over the years. I’ve hesitated to expand on things via social media. However, I feel that being so reserved with what we disclose has been doing more harm than good, as sharing is how we establish connections with one another and help those who may be going through something similar, feel less alone.
The things my family has been through are things that I would not wish on my own worst enemy. We have been, and continue to be, as diligent as possible at watching him, but he manages to sneak out and end up in outlandish places; we have to call the fire department or get a neighbor to come over because he falls and we can’t get him up; he has to wear Depends because he has accidents on a daily basis; and we regularly endure behavior that is more reminiscent of a toddler rather than an adult. But these things are just the tip of the iceberg. My mom has had to see and do much more, but I’m not going to speak for her; I can only speak for myself.
A couple of years ago, my parents moved out of their house of 17 years in Kure Beach to move to a smaller, more manageable place on the island. The move has confused my dad. He constantly packs up his things and asks about checking out because he thinks he’s in a hotel. He knows who we are, but he doesn’t recall where we live or what we do or whether or not we’re married or have been married. He’s aware that he has grandkids, but they never got to spend time with him when he wasn’t sick. They don’t know him. They can’t know him.
We’ve had to listen to others tell us there is nothing wrong or that he seems “ok.” And that only makes the pain worse. A few years ago, he could buck up for visitors and put on a show, which maybe led to false impressions of how sick he truly is, but the show is over.
This is a real disease. It has taken over my mom’s life, and it has robbed me and my siblings and my niece and nephews of quality years with my mom and dad. I’m sharing this now because awareness starts conversations; and conversations lead to caring; and caring leads to cures. It may be too late for my dad, but it isn’t too late for others.
I struggle to remember what life was like with him before frontotemporal dementia, so I’m honoring my dad by sharing this very abbreviated version of his battle with a terrible disease.
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