June 21st is the summer solstice in the northern hemisphere; the time of year when the sun is highest and the season of vacations officially begins. It has also been designated "The Longest Day" in a month meant to heighten our awareness of Alzheimer's disease and brain health. It seems strange to have a month to promote awareness of a subject that editors, bloggers, researchers, celebrities and policy makers stream continually into the headlines. Anyone who keeps up with current events is aware of Alzheimer's disease and its escalating, multifaceted costs.
But it's hard to derive from the grim statistics a real sense of the myriad losses faced by Alzheimer's patients and their caregivers. During June, many of us are shopping for new swimsuits, arranging for pet care, bringing out our suitcases, and servicing the car or double-checking the plane tickets. Let's be conscious, while we do these things, that for approximately 20 million Americans, planning a vacation may be next to impossible. Approximately five million have Alzheimer's disease; 15.5 million are family caregivers.
The disease eventually robs its sufferers of the ability to plan a week away from home in a place where niggling worries are swept away in a tropical breeze or supplanted by vistas of lakes and mountains. The vacations that we deliciously anticipate, sometimes for months in advance, are among the secondary losses of Alzheimer's disease. The world becomes an increasingly confusing place, where getting dressed in appropriate clothing in the morning is a difficult task, much less packing a suitcase. Even finding the way around one's own home can be a journey of sorts and catching a glimpse in a mirror the kind of encounter we might have with a stranger in an airport: "Oh, excuse me. Have we met? Here let me help you with that. What? No, I can handle it... "
The daily routines are enough of a challenge for a caregiver juggling the unpredictable behaviors and emotions of a person in advanced dementia without the additional demands of precise arrival and departure times, of long periods when remaining seated is required, and of public settings without a "family" restroom that can be occupied simultaneously by opposite sex partners, one trying to help the other with buttons, tissue, soap and towels.
A caregiver I know tells a sweet sad story of trying to take his wife of forty years, then in mid-stage Alzheimer's, on an overnight trip to visit relatives. They were delayed, as is often the case for caregivers, who are, as a group, more conscious than most of Burns's iconic line about the best laid schemes of mice and men. He spent hours and hours driving through a drenching rainstorm and managed to get the two of them checked into a hotel, well after other guests had turned off their televisions and put out the do-not-disturb signs. As he dragged in the luggage, she sat primly on the bed watching, her hands folded in her lap, apparently believing herself to be once again in a 1950's world of gloves and aprons, when dates with men ended, if they ended well, with a kiss under a porch light.
"You know," she said, with a shy, resigned smile. "You're a nice man, but I'm just not that kind of girl." The exhausted caregiver spent the night on an overstuffed armchair, his feet propped on the desk.
It isn't easy for caregivers to travel with a loved one suffering from serious memory loss. And it isn't inexpensive to arrange interim care and travel alone. Professional home care by a trained nursing assistant, secured through an agency, can cost over $500 for a 24-hour period. The innumerable questions caregivers face -- Can I leave her for an hour to do the shopping? How will we get through this weekend without any help? Can he make it through dinner at a restaurant?--are very different from Can we afford a trip this year? and Where would you like to go?
Maybe the month of June needs a different word for Alzheimer's than "awareness." Maybe the word should be "action." Many people around the country are, in fact, organizing Alzheimer's events or fund-raising activities for June 21st to honor loved ones with Alzheimer's. You can also get involved another way that counts: Is there a caregiver in your midst who cannot afford outside help, and whose partner, parent or sibling with dementia is most content at home? Get a group of friends together. Arrange a safe, enjoyable time for the person whose failing brain dictates the need for a familiar routine and environment, maybe looking at photo albums and watching old television shows. Treat the caregiver to a mini-vacation, not an opening to run errands or catch up on other work, but an opportunity to relax. It doesn't have to be long and expensive. An evening out occasionally would help.
We need months and days when we are brought face-to-face with the reality of a hardship we might not share or fully understand, at least not yet. Wearing purple to show solidarity, donating money and taking part in events are important. But realize, too, that a few friends who join forces and give increments of time steadily, throughout the year, can bring about meaningful relief in a situation that may provide little chance for it otherwise.
Mary McDaniel Cail is the author of Alzheimer's: A Crash Course for Friends and Relatives and a blogger for Architects of Change, mariashriver.com.