Nothing Can Prepare Men and Dads for Alzheimer’s—but the Power of Story Could Turn the Tide for Awareness

A few times, over the last couple of years of Dad’s illness, I have to admit pondering, how at peace he would be if he just passed away quietly, instead of hanging on.

Even during the last six months knowing that his death was imminent, the end stage of Alzheimer’s and his last days for us, were very difficult. It’s impossible to begin healing without some form of finality. We simply drift in out of the lucid moments with him, until the very end. And the end is the part few people talk about.

Dad once stood at 6’4”, broad shouldered, and towering over most. Now he lay in bed, a frail, emaciated shell of a man, no longer able to eat or drink on his own. His arms and legs stiffening, as I watched the circulation drawing inward. Years earlier, at 65 years old and looking forward to retirement, Dad first faced this unthinkable diagnosis. He couldn’t remember friends’ names and drove the wrong way down one way streets. Otherwise, he was the picture of mature health. Doctors fail to tell you that the healthier and stronger you are when diagnosed, the longer your journey.

The Alzheimer’s journey drains the soul and life from patient and caregiver, year after year, until finally laying waste to every part of your personality and every thought and memory that makes us human.

I was only 28 when I learned about Dad. Like many young men treading their way through young adulthood, I was not yet aware of myself as a person, often struggled to be present, and certainly didn’t consider myself “a grown up.”

But nothing fast tracks maturity quite like mortality, smacking you into submission.

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In the 11 years since Dad’s diagnosis, there hasn’t been a single, viable way to deal with this epidemic. There’s no treatment. There’s no cure. Nobody gets out alive. Diseases like Cancer are awful. But everyone knows what a Cancer survivor looks like. Have you ever met an Alzheimer’s survivor? Me neither.

Over 40 million people in the world, suffer from this disease—and these are only the numbers we know about. Many people still don’t come forward and talk to their family or their doctor. They chalk up early symptoms as “just getting older.”

People were afraid to talk about Cancer and then AIDS. And when we finally banded together the global army of patients, families, and advocates, and coupled passion with money, we developed treatments for those diseases. In the United States alone, Alzheimer’s costs us $236 Billion, EVERY year. And the National Institute of Health (NIH) needs to spend at least $2 Billion every year, to meet the minimal research budget, if we are to find a cure by 2020. That’s a goal we can reach because we don’t lack the scientific talent. We lack funding. Today, the NIH barely has less than $1.5 Billion to work with and that simply doesn’t cut it. Despite the immeasurable human toll and the looming financial devastation facing our economy, some of us are still afraid to talk about Alzheimer’s and show the REAL face of this insipid disease.

We spoke extensively with hospice and doctors, but there’s no guidebook that prepares you for how to work with nature and help ready someone to leave this plane for another. But now it was no longer about preserving life. We were simply prolonging death. I am thankful because Dad got to meet my newborn son. They sat together, revealing to us the striking similarities of their very different journeys. One, a beginning. The other, at the end. Both demanding constant, nurturing love and care, while imbuing empathy and endurance in all of us. On the evening before he died, I went into Dad’s room and sat down on his bed. “Hey Dad.” Despite the fact that he was hardly there and he was a shell of a man, I could see him almost cracking a smile. Like he heard me. I put my hand on his hand. It was cold. And I swabbed his mouth and I talked to him.

I just told him I loved him. I told him I was proud to be his son. I sat on his bed and watched, as he quietly passed away.

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Make no mistake, if we don’t stop Alzheimer’s, it will stop us.

Celebrities are wonderful for a cause, but real change comes from the stories and efforts of real people. In recent years, crowdfunding sites like GoFundMe have been fueled by powerful stories. People want to be personally moved and see where their money is going. The more authentic and personal the story, the more people are willing to give. One of the most successful, story-driven campaigns is the Humans of New York project. HONY has raised millions for cancer research and other charities. And since it first began in 2010, GoFundMe has raised over $2 Billion for various causes, through the power of personal story.

The MyAlzheimers story project is building the world’s largest collection of Alzheimer’s stories on video. We’re using these stories to tackle the three main hurdles we face, in finding a cure for Alzheimer’s: (1) remove the stigma, (2) raise more money for research, and (3) get more people into clinical trials. Before we could ask the world to share its stories, I first had to share my own.

“Carpe Kilimanjaro: An Alzheimer’s story,” documents my family’s 10 year struggle with Dad’s diagnosis. Our award-winning documentary is a story about fatherhood, aging, and becoming a man in the face of Alzheimer’s. Our film is the foundation of and the call-to-action for the MyAlzheimers platform. It’s all about story. The more we collect, the more people we can help, the more money we raise for the cause.

The last decade has given me a crash course in how to be a human being, how to be a man. Hopefully, how to be a good father. At the end of the day, that’s all I really care about right now. I want my son to understand the story of how my father lived, so whatever happens to me, he’ll have the strength to cut his own path and become his own man. I am here. I am more present than ever. He’s going to understand that gift and the road I travelled. And if his path might one day lead him to fatherhood, I hope he will embrace the challenges and the gifts of life, as two sides of the same coin.

And I would love to be around, to watch it all happen.