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The Cure Alzheimer's Fund is a non-profit organization dedicated to funding research with the highest probability of preventing, slowing, or reversing Alzheimer's. 100% of donations to this fund will go to research.
We chose Alzheimer's as our cause partly because one of our co-founders, Nico, has seen the devastating and debilatating effects of Alzheimer's firsthand. Below, we've included Nico's narrative which should provide you with a better understanding of our project.
A letter from our co-founder Nico
I was nine years old when I first ran the Bolder Boulder with my grandfather. He was scheduled to start before me, but instead waited, joining his grandson for the 10-kilometer course. Never one to let me off easy, he crossed the line ahead of me, his 65-minute mark not quite the same as the 50-minute ones he was used to running. The following year, the tables turned; a late kick propelled me ahead of my grandfather by a couple of minutes. A year later and he had already acknowledged he would be fighting a losing cause against my growing legs, instead running with his wife, who for the first time had finally agreed to participate in what had become a family tradition. In her first ever race, she managed to place in the top-10 in her age and gender category, something my grandfather had never been able to accomplish but had always dreamed of. We all thought he would have another strong opportunity to try the following year. We were all wrong. In 2007, my grandfather suffered a stroke, and everything changed.
It wasn’t the pleasant type of change, the kind that slaps you in the face before letting you look it in the eyes and adjust to it. It was the sort that shoves you to the ground, offers you a hand back up, and then lets you fall back down at its feet. It was the type that smiles at you, and then proceeds to spit in your face. It teases you, convincing you it is your friend before stabbing you in the back. You’re never afforded the opportunity to fully face it, never allowed to look it directly in the eyes, never able to truly adjust…
From that day on, my grandfather suffered from gradual memory loss, initially only stroke-induced dementia, but eventually early-onset Alzheimer’s as well. His memory faded bit-by-bit, moment-by-moment. Some days he would be lucid, some he failed to even recognize my grandmother, his wife, once going as far as to threaten the stranger he found himself waking up next to.
This wasn’t the first time my grandmother had sat through this play, not the first time she had to endure watching a loved one’s head slowly become vacant – her mother had suffered the same fate. Unfortunately, this didn’t make it any easier. If anything it was scarier, knowing what was coming but not knowing how to stop it.
I cannot say for whom it was hardest. It might have been for my grandfather, the career diplomat and Duke and Stanford grad who prized his ability to think above all of his other traits. It might have been for my grandmother, the devoted wife caring for a husband who no longer recognized her. Or it might have been for my mother and her siblings, watching their loving father struggle to understand how to put on his shirt in the morning. I don’t really think it mattered though; there is no value to suffering more than anyone else. In a situation where everybody hurts, there are no winners.
My grandfather did his best to not let his disease alter who or what he was during that first year. I did what I had always done and followed suit. But as my running continued to get better, his deteriorated.
In 2010 we moved my grandfather to a senior memory care facility. He was still running, but it was different now. He was no longer running for the love of the sport, but was instead running away and disappearing, whether from mere disorientation and memory loss or from a desire to escape what he and his life had become, it was unclear. If it wasn’t for his ID bracelet, I’m not sure he would have always returned. Or been returned really. Regardless, he was no longer safe at home, and it was time for him to be under constant supervision.
It was difficult visiting him at his new home. I never knew whether he would know who I was, whether there would be that glint of recognition in his eyes. I never knew if I would be having a conversation that day, or just leading a confused old man in aimless laps around the halls. As time wore on, the latter grew to be more and more the norm, the former becoming almost nonexistent.
In August of 2011, I left home to live in Spain for a year, escaping the difficulties and suffering of watching my grandpa’s degeneration. But there was no real escape, no way to make what was happening to my grandfather go away.
I was sitting on my friend’s couch getting slaughtered in a game of FIFA when I got the call. I popped outside, the biting November winds slicing through my cotton t-shirt. No matter, I was already numb. My grandfather was dying, and it appeared unlikely that he would get to witness another sunrise. He had fallen and severely hurt himself when no one was looking, possibly in a moment of lucid purpose. He happened to be awake when my mom called, though not aware enough to speak when she put the phone up to his ear. She claims that his face lit up when I spoke to him; to this day I do not know whether she was simply comforting her son from afar, or if my voice was actually the one lucky enough to be remembered.
He passed that night. I ran, not yet ready to deal with the truth, not yet ready to face the facts. I completed my program abroad, then extended it, spending an extra month doing something he loved and backpacking through Spain. But I couldn’t escape forever.
We scattered his ashes in August 2012, the whole family huffing their way up his favorite hike to a set of cascades. There was little closure for me though, no way for me to adequately say goodbye. I wasn’t ready then, and am still not ready now.
Since then, my grandmother has begun the same spiral, and it is just as painful as the last time. Over the summer I was lucky enough to see her nearly everyday, and nearly every day I had “grown an inch or two” since the last time I had seen her. This past winter we moved her into the senior's home next to my grandfather’s memory care center. We are hopeful that the social support and care she receives there will help slow the process, help her adjust to her own deteriorating memory. That is the best we can hope for. As of yet, nobody wins the fight against Alzheimer’s.
My mother knows that she is likely next. We have talked about it many times before, about how the demons will undoubtedly come creeping into her brain, eating everything that they can. When it begins to happen, my mom has asked that I take her on a hike high up in the mountains, make sure the trail is treacherous, and then push her off of a cliff. She says it with humor, but I know she wants to die not only doing something that she loves, but also remembering those whom she loves. She doesn’t want to suffer the way she has seen her parents suffer. She doesn’t want to put my brother and me through what she has been through.
As much as I love my mother, I know that this is something that I cannot do. So instead I am doing what I have always done: I am running. But this time it is different, this time it is with a purpose.