On September 30 at 3 p.m. EST, puzzle fans across the United States will download what looks like a typical Sunday crossword from the Internet, except that it's anything but. It's the centerpiece of a national contest sponsored by the Alzheimer's Foundation of America to raise awareness of the wide-ranging effects of Alzheimer's disease.
The idea for such a contest grew out of events that happened in the early 1990s. My wife, Marie, and I had been living in Southern California and were planning a move to Oregon. Marie typically visited her parents in Florida every January, and it was the January 1993 visit that changed everything. Her father died suddenly during her visit, and Marie found herself the primary caregiver for her mother, who had just been diagnosed with Alzheimer's disease.
So instead of relocating north, we moved east to Tampa, Florida, and faced the difficult day-to-day life of caring for Marie's mom, Jo. For the next three years Marie did everything she could to keep her mother as comfortable as possible, despite overwhelming circumstances.
And "comfortable" meant that putting Jo in a care home was out of the question, since she became extremely agitated whenever she was in "strange" surroundings. Even her own home sometimes frightened her. On one occasion Jo looked at us fearfully and insisted we let her out the back door -- she thought we were robbers. We followed her as she fled in short, determined steps around the block.
Another time Marie turned around to find her mother gone, along with the dog. After a frantic hour, a nearby dentist's office called Marie to say her mom was there. They had tracked Marie down using the Humane Society ID on the dog's collar.
Marie's mom also had a tendency to get up at 1 or 2 a.m., go into the kitchen, turn on all the burners and try to start cooking. One day, I woke up, walked into the kitchen and found Jo buttering the table. She also cut an electric fan cord with scissors while it was still plugged in.
We once got locked out of the house with Jo still inside and it took a half hour for her to understand what "lift the latch" meant.
With things happening at all hours, seven days a week, Marie felt that if she didn't find another set of helping hands, and quick, her own sanity would be at risk.
Most Alzheimer's caregivers have stories similar to these. What usually makes headlines are breakthroughs in research or million-dollar grants, and rightfully so. But after Marie's 1,000-day ordeal it was clear that the plight of Alzheimer's caregivers needed to be a priority as well.
I make crosswords for a living. My Sunday puzzle appears every week in the Washington Post, Los Angeles Times and 45 other papers. So in the early 1990s it was with great interest that I kept hearing crosswords mentioned almost every time Alzheimer's disease was discussed on radio or TV. According to the experts, mental exercise, such as solving crosswords, enhances brain health much the same way that physical exercise enhances body health. I even heard Phil Donahue mention crosswords while discussing Alzheimer's disease on his show. (I met Phil many years later and found out he's a longtime crossword fan.)
More recently, the importance of mental stimulation to boost brain power has been gaining greater attention, especially as the incidence of Alzheimer's disease continues to impact more of the nation's aging population. There's no cure for the brain disorder, so people are desperately searching for ways to help age successfully.
Here was my way to give back -- to use my skills as a puzzle creator to develop a contest that would generate media buzz about crosswords, Alzheimer's disease and caregiving, and raise money in the process. Marie and I found the perfect collaborator in the Alzheimer's Foundation of America, a full-spectrum, A-list nonprofit organization dedicated to people with Alzheimer's disease and their families. And one of their priorities is helping caregivers.
When Marie and I first sat down with the organization's leaders in New York City in March 2011, we discovered we were already on the same wavelength -- the Alzheimer's Foundation of America had just started a program of brain games at the community level to raise awareness of brain health.
Thus was born the foundation's National Brain Game Challenge, now in its second year. On September 30, when players download this year's puzzle and start solving, they'll not only be solving a challenging, entertaining Sunday crossword -- they'll also be looking for clues to a secret message that is the key to solving the contest. And using the Internet to look things up is perfectly legal, even encouraged.
To make the contest fairer there are two separate player categories, one for casual solvers and one for puzzle professionals, with the first prize in each category being $2,500. The entry fee is $25 and all proceeds go to the Alzheimer's Foundation of America. (For details and to register, visit www.alzfdn.org.)
And this year's event will be especially personal for me -- my own mom was diagnosed with Alzheimer's disease this past March.
When an ill person brings up subjects that make you feel uncomfortable, it's natural to want to squelch the discussion or rapidly change the subject. However, it's very important to listen unselfishly and avoid responding with, for example: "Let's not get into that right now. Can't we discuss something more pleasant?" or "Do you really think it's helpful to dwell on this topic?"
Whether the patient asks a spiritual or theological question that catches you off guard or she wants to know about the side effects of a medication, it helps to learn how to be noncommittal without seeming evasive. You don't want her to think that you don't care or that you're hiding something, and you definitely don't want to offer misinformation that might do more harm than good.
Even for people who weren't very spiritual or religious throughout most of their lives, it's natural to experience spiritual anxiety during a serious illness. And it's also natural for this anxiety to lead to questions that caregivers might find difficult or even overwhelming. If your loved one asks, for instance, 'What's next? Will prayer help? Why did God let this happen to me?' it's best to call in a qualified cleric.
Just as most of us are not comfortable with chronic illness, we are also not comfortable with crying. When tears appear, we tend to whip out a tissue and murmur something along the lines of, "It's okay. Don't cry." From now on, continue to pass the tissue when your ill loved one starts to tear up, but don't pressure him to stop sobbing. Tears are a natural emotional release for emotions ranging from anger to sadness to fear, and can be very therapeutic.
When your loved one is uncomfortable, upset, or worried, you might be tempted to utter platitudes like, "Everything will be okay," "I know how you feel," "God has given you a long life," or "It's God's will." While we hope that these phrases will be a quick fix to problems we'd rather not deal with, the truth is that they're trite and meaningless. What's more, sugarcoating reality doesn't fool most people, and it certainly doesn't spark positive change.
Anger is a natural human emotion, and it's important to recognize that chronically ill people have a lot to potentially feel upset about. Understandably, many patients are angry that they are so sick. Plus, their pain and energy levels might make them less patient or less able to handle stressful situations. Therefore, it's not unusual for caregivers to be on the receiving end when their loved one's fuse blows for any reason.
Understanding how and why an illness is getting worse and more painful is intellectual. But experiencing it is a very visceral and emotional thing. The patient needs for you to connect with him on a heart-to-heart, gut-to-gut level, not just a mental one.