Episode 4: Carpe Diem
Season 1: Surviving Alzheimer’s
This is an ongoing series chronicling our experience with Alzheimer’s — previous “episodes” are available to read in chronological order.
Week 15: Years ago D convinced me to invest in a timeshare. She said, “Paying for this now will force me to go on vacation.” That strategy didn’t work so well — until now, when she no longer has to juggle her work schedule. Fortunately, I have some flexibility with my work schedule and am in full carpe diem mode, planning trips and finally making the most of our timeshare system, all within driving distance.
This feels like a silver lining to a ticking time-bomb of a disease. What we don’t know is, how long is the timer set for? Two years, five years, ten years, or will we be the age of the cure? I’m not going to worry about the future yet. For now, we live for today.
This week we have 5 nights in Newport, RI. However, I have to go home to work a couple of days in the middle of our stay. I arranged to have some friends and family stay with her while I’m away. D has her brother, her sister, her niece, and her college friend (the one she went to Nashville with) coming at different times so that she’ll never be alone. By the time I returned to the timeshare, I heard how much fun everyone had. And once again, no one got lost.
On our last day in Newport, D and I had one of our best vacation days ever: early afternoon oysters and an IPA (me) and crab cake and a cocktail (her), walking, shopping for the perfect zippered hoodie (she picked one with a starfish), Irish coffee, our own private happy hour on the roof of our resort as the sun set over the marina, dinner (D loves scallops), and a nightcap at a chic bar with our new favorite bartender. As we walked back to our room, I could feel how much we were both soaking in the glory of a perfect day together.
In retrospect, I am fully aware that alcohol does not help Alzheimer’s. But, at this early stage of her disease, when we were able to share moments that felt like there was no disease, and enjoy each other as much as possible, I was not concerned about the long-term impact of a few drinks. We seized the day.
Week 16: D is getting her first monthly infusion of an experimental drug in a research trial, intended to mitigate the progression of her disease. Although it’s clearly getting harder for her to do things like write a check or say the right word, I am 100% on board with the thought of us navigating her disease at this stage for the rest of our lives. If this is what her Alzheimer’s could be like for the foreseeable future, I would feel like we dodged a bullet.
Week 17: This past weekend, we headed to the Berkshires for a 3-day weekend. D’s sister, her husband, and their two adult children joined us. We stopped at the Great Barrington farmer’s market on the way, stocked up on local coffee and treats. The weather was perfect. The guys played golf while the ladies went swimming—D did laps like she was young again.
We went to dinner at a Mexican restaurant. D made friends with the waitress, who got a kick out of telling us there would be a $25 charge for salt on the margarita glass and $150 for the salsa. It was a festive atmosphere, and we were glad to contribute. There was a large family enjoying themselves next to us, passing around their baby girl, keeping her happy. Then, as if the mother could sense how much it would mean, she turned to D and said, “Your turn,” and handed D her baby. D stood up with such a look of pure joy and bopped as soothed the baby, both equally content — a spiritual moment. On our way out, D had the waitress write her name in her travel journal.
This week, when we got back home, I installed room-darkening shades to the window behind our bed that faces the sunrise. It helps us both sleep a bit later, and when we wake up, I reach over and pull the shade string to let in the glory of the morning sun.
Week 20: We are in Rockport, Maine (another timeshare exchange) for Father’s Day weekend. We are doing a 5:30am drive to Acadia National Park. We drive to the top of Cadillac Mountain, one of the most iconic spots in the country to experience sunrise. I am pleasantly shocked that there is no one else up here. The sun is low, bright, and unseasonably warm over the Atlantic Ocean. We settle on a granite ledge and unpack our breakfast of berries, granola, and almond milk. I set up my camera behind us on timer mode to take a picture of us from behind, facing the rising sun. Another moment seizing the day.
Week 22: We came home from a 7pm movie and are sitting on our patio as the sky fades into night. The tomato garden looks hopeful. The stars are popping out in their gradual succession. D points out the Little Dipper over the peak of our house. We sing a Bruce Springsteen song playing on the Bluetooth speaker (“I’ll wait for you, and if I fall behind, wait for me”). As the fireflies appear and do their magical dance, I say, “I hope we have 10,000 more days just like this.” Then I do the math in my head and realize that would be about 30 years. I started to correct myself to say more like 1,000 anyway, but I didn’t. I thought, why not 30 years? We can work towards the cure. We can have just as much chance as anyone else to grow old together. We’ve been dealt our cards. Now we just have to play our hand.
And keep making lemonade.
A note about the kindness of strangers and the woman who saw something in D, handing her baby to her to hold. She’ll never know what a meaningful gesture that was, but I like to think she will be on the receiving end of such an unsolicited gesture at a similar meaningful moment.
