Our daily lives are comfortable repeated patterns of rituals and responses – fill the coffee pot in the morning, drive to and from work where we may confront multiple challenges needing to be resolved, and sit in the evening to watch the nightly news or entertainment.
If we are sharing lives with a partner or loved one with dementia in the early stages, we may find there are only minimal disruptions to the day-to-day routine. However, he or she probably has very little sense of time and/or its implications, probably can’t plan and execute a sequence of tasks to achieve a desired goal, and has difficulty articulating or even repeating the essence of a conversation. Unfamiliar surroundings may exacerbate this discomfort.
So here we are, my late husband and I, perched on the edge of our bed in an Athens hotel in fall 2007. We had enjoyed a lovely cruise in the Greek isles and taken in many splendid sites. Unfortunately, as we departed through the Athens airport, I’d fallen face first on the marble floor, split open my forehead when my glasses broke over my eyebrow and been whisked unconscious in an ambulance to a nearby hospital. No serious damage other than a few stitches except that I’d been declared unfit to fly. Once that issue was resolved, my husband and I had to refind our way back home to Durango.
Years before cellphones and Google, one resorted to 800 numbers and airline receptionists speaking in difficult dialects or putting the call on hold interminably. I’m juggling multiple four-by-six note pads on my lap, scribbling timetables and airport codes, calculating costs in my attempt to rebook us. My husband is sitting placidly beside me and was no help in sorting out the mountain of data I’d collected. Eventually, a route fell into place that took us from Athens to Heathrow, Chicago, Salt Lake and back to Durango via Delta Air Lines. As we boarded our flight in Salt Lake, road weary and strung out, I said aloud, “Finally, honey, our last leg and we’ll be home.”
His response: “Home, where’s home?”
Fast forward to New Year’s 2018-2019, when my second life partner and I went for a romantic getaway to Pagosa Springs – probably the worst possible choice for a person suffering from dementia who is easily disturbed by unfamiliar circumstances. Encircled by 23 geothermal pools set among terraced walkways, dimly lit with steam rising and footing rough and slippery, muffled sounds from other soakers, he was desperately uncomfortable. We quickly retreated to our room. At 4 a.m., I was startled awake by a fully lit room and a partner who begged me, “We’ve got to get out of here right away. The room outside is filled with hordes of people who are all trying to get in.” Hallucinations are not uncommon for patients in late-stage dementia.
He led me into the hotel lobby, which he insisted was crowded to the gills though only the beleaguered night manager sat alone at the front desk. My only means of calming him was to put him in the car and make that treacherous drive back to Durango through a blinding snowstorm. Clenched hands on the steering wheels and white knuckles underneath, I homed onto one taillight of the car in front of me and listened for the rumble strips when I drifted out of my lane. As I escorted a remarkably calm man into his house two hours later, I called his daughter. “Your dad’s home now – safe and sound.”
A cautionary note for people thinking about travel with an Alzheimer’s patient – think twice before setting out on an adventure or you may end up seeing doubles.
Mary Nowotny is a freelance writer, migrating between Hermosa and Tucson, Arizona, who has learned a lot about the soft sides of old age, sickness and dying.
