Tonight, as the Patriots and Giants bask in the excitement of Super Bowl XLVI, it’s worth noting that Alzheimer’s Disease knows no boundaries. The disease doesn’t care if you’re 55 or 85, male or female, rich or poor, a union plumber or an NFL Hall of Famer.
Take for instance former Baltimore Colt, John Mackey. He was only the second tight end in history to be inducted into the Pro Football Hall of Fame, and when he won his Super Bowl ring in 1971, no one would have guessed he would spend his later years fighting the debilitating effects of frontotemporal dementia.
Mackey’s wife, Sylvia, became his caregiver and biggest advocate, ultimately campaigning for increased long term care support for retired players like her husband.
This article discusses Mr. & Mrs. Mackey’s journey and specifically chronicles a horrible incident they experienced in the airport while traveling to the Super Bowl after his diagnosis. Most caregivers know firsthand how difficult it can be to take their loved one out to dinner, shopping, or even to the doctor. While the Mackeys’ travel experience is an extreme case, we’ve all been there in some way, shape, or form.
You’re out in public, and your loved one says or does something completely inappropriate, perhaps even offensive. To the average onlooker, they appear “normal,” making the inappropriate comment or action seem… well… fairly mortifying. We, as caregivers, smile awkwardly and try to move things along, but these incidents are burned into our memories forever. Sadly, if our loved ones realized what they’d said or done, they, too, would be mortified. But, they have no idea…
One solution for dealing with these awkward moments is to have special business cards printed explaining that “My parent has dementia and sometimes does or says things that are inappropriate. Thank you for being patient; this is an unfortunate part of the disease.” The cards can be quietly passed to restaurant servers, retail associates, or other patients in the doctor’s office waiting room. We never did this, but in hindsight, wish we had.
Many people think Alzheimer’s and/or dementia is just loss of memory or senility, but these disease are so much more complex than that. It’s truly a roller coaster ride like no other…
For more useful information, be sure to check out the Alzheimer’s Association Blog.
Until next time…Carpe diem…
The Long and Winding Road... 