It’s 6:19 a.m. and it’s dark. I’ve had three shots of espresso and my legs are vibrating and tears are streaming down my face. I shouldn’t be here. My ride for Alzheimer’s Association The Longest Day™ should never have happened. My grand plans — having a big team and raising lots of money to beat this horrible disease that stole my mom — fell apart. Alzheimer’s got in the way.
I’m standing next to Rebecca, who I just met, and we’ll be riding together for the next two hours (thanks to Tracy from Plan B Cycling), as the sun comes up over New Smyrna Beach, Fla. We’re riding to put a very small dent in Alzheimer’s to help make up for the train wreck this disease has created in my family’s life.
My Longest Day plans went out the window when my mom went into the hospital for the eighth time in the past year. I had to go with her. She tells the doctors that she hasn’t been in the hospital since childbirth. She doesn’t know which pills she takes or which medical problems she has. She answers “yes” to almost every question the doctors ask her. I pack a backpack and my laptop so I can work using the hospital Wi-Fi.
This hospital trip was easy compared to my longest day since my mother’s diagnosis of Alzheimer’s. It started in January around midnight with an ambulance trip. Mom was admitted around 3 a.m., but we didn’t get up to a room until around 5 a.m. It was non-stop questions and answers from nurses and doctors until late afternoon, trying to talk in whispers so mom wouldn’t hear too much and worry. I was finally able to recline in the sleeper chair in her room, and grab some sleep between blood draws and vital signs, after 41 hours straight.
Eight weeks ago, as my fundraising for The Longest Day was starting to ramp up, I was getting the word out about my event…and my mom’s Alzheimer’s symptoms started to go haywire. A month ago, mom was in a wheelchair having fun at Epcot for my birthday. Today, she hasn’t been out of bed in weeks. She gets a little weaker every day.
Alzheimer’s is not my mom’s worst medical problem, but it makes every one of her medical problems worse. She has back problems that affect her balance, but she couldn’t remember to use a walker, so she has to have round-the-clock supervision. Her loss of feeling and awareness caused problems that led to infections that made her Alzheimer’s symptoms worse.
We chose to disrupt everything in two families in order to take care of my mom at home, instead of putting her in a facility. For us, there was no choice — it’s what each of us would want for ourselves — end of story. I was starting a new business, which is now on hold. My fiancé, her son and I love to travel and find adventures — not anymore. Alzheimer’s got in the way.
I didn’t think mom was coming home from this hospital trip. It was late one night, after a really long day of watching my mom fade away. I sat down and wrote Tracy from Plan B Cycling and told her that I didn’t think the ride was going to happen. I had been so focused on taking care of mom that my fundraising and team recruiting had stalled weeks ago. I had raised a little money and had no teammates. There was no way I could ride 16 hours by myself, given how tired I was at that moment. Alzheimer’s was getting in the way of my Longest Day ride, too.
Mom’s condition continued to get worse and we decided it was time to stop treating her and bring her home with hospice care. We still see glimpses of mom — her smile, her warmth and a little of her sense of humor — that is what makes it worthwhile to do what it takes to care for her every day and night.
The next day in the hospital, I got an email from Tracy who decided the ride should go on, so she found riders to cover all but two of the 16 hours. Our local Parks and Recreation Department waived the rules and let us use a pavilion with one day’s notice. Trish and our caregiver are taking care of mom so I can ride at least part of the day. My legs aren’t in shape and neither am I, but, standing over my bike this morning, my heart feels like the Grinch— three sizes too large.
This is how I came to be standing here with the sun peeking out — proud to have friends like Tracy, Rebecca, Tara, Conrad, Melissa and Christian. Proud to have family like Trish and Brayden. Friends and family who are willing to get in way of Alzheimer’s!
We’re in it until Alzheimer’s is finished.
Wade Caldwell lives in Florida and is participating in Alzheimer’s Association The Longest Day™ , a sunrise-to-sunset relay event to raise funds and awareness in the fight against Alzheimer’s. Click here to follow Wade and his team during this 16-hour event.