Last year, the holidays passed in a blur. At age 54, I had recently been diagnosed with early-onset Alzheimer’s and my days were consumed with sadness and the need to deal with the realities of a fatal disease: long-term care insurance, wills, powers of attorney.
This year, almost 18 months post-diagnosis, I’m determined to introduce a level of holiday peace and calm: to slow down, spend time with family and friends and enjoy a bit of the wonder of the holiday season.
But it hasn’t been easy.
The cold reality of Alzheimer’s has already twice disturbed this holiday season. On Thanksgiving, I ignored every single iota of advice I had received and attended a large, annual party. I was determined to enjoy myself even though I’ve been told that large gatherings can overwhelm someone living with Alzheimer’s. Sadly, these warnings proved true and soon the noise volume in the room and the many simultaneous conversations taking place became too much for my brain. I tried planting myself in a quiet corner in front of the ball game on television, but I soon burst into tears and retreated to a bedroom by myself.
My husband, Tim, soon found me and said we should leave. I stubbornly insisted that we stay so he could enjoy the party, but given the circumstances I doubt he did.
A few weeks later, we attended a small celebration of two family birthdays. There was nothing stressful about the situation, but it was a very long day and, toward the end of the evening, I suddenly got very tired and once again burst out in tears. I couldn’t stop and had to leave without even saying goodbye. The tears didn’t end until we were halfway home, maybe 20 minutes later.
Wanting to surround myself with family and loved ones during the holidays while at the same time being overwhelmed by the experience is a cruel paradox of Alzheimer’s. But I am not giving up and continue to strive to find the right balance.
Seems crazy now, but slowing down to enjoy the holiday season is not something I’ve done previously. Ever since graduating from Penn State University and winning acceptance into the clerical program at The New York Times, every waking hour has been about work. Working endlessly to win promotion to reporter. And when I shifted from journalist to advocate, I worked endlessly for our civil liberties and environment. By the time I left my job as communications director for an international environmental advocacy group, I was commuting 5 hours a day, supervising a team of 50, spending endless hours on airplanes and days in hotels.
Work was all consuming.
But Alzheimer’s changes many things, including one’s priorities.
I’ve now put my work life behind me. I would like to say it was 100 percent my decision, but the truth is that my progressing Alzheimer’s had its say, too. Although I wake up many mornings feeling absolutely fine and wondering if the Alzheimer’s diagnosis is nothing more than a really bad nightmare, the feeling doesn’t last long. I’ll start to struggle for words, realize that I’ve completely misplaced an important document or totally forgotten something that happened the day — or hour — before. I definitely feel as though I’m deteriorating and I increasingly rely on Tim for my day-to-day memory.
As my disease intensifies, so too, does my desire to focus on the things in my life that matter most. I know that I must take seriously the need to find peace on earth (or at least on the small piece of earth that I call home). I’m working on slowing down, appreciating life more and taking time for myself. Long regular walks along the Delaware River with my dog. Stopping to enjoy — and snap a photo — of the sunrise or sunset. Reading in a comfy chair with my husband and our dogs nearby.
This year, I’ve vowed to accompany friends to New York to see the holiday windows and tree at Rockefeller Center. (Although I lived in the city for many years, work had trumped holiday sightseeing.) But in planning my trip, I am mapping out quiet places to recharge when events become too much.
Slowly, I’m learning this holiday season that it’s probably better to leave the hustle and bustle of the holidays to others. That doesn’t mean, however, I will let my Alzheimer’s keep me from family or friends or doing the things most important to me. I am carving out my own holiday path this year. It will be smaller and slower, but just as sweet.
Phil Gutis is a National Early-Stage Advisor for the Alzheimer’s Association. The Alzheimer’s Association offers these holiday tips for people living with Alzheimer’s.
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