They say behind every powerful man is a good woman. Sylvia Mackey’s husband John was the power player on the football field, but it was her passionate plea to the NFL, one of the most powerful organizations in sports, that resulted in the “88 Plan,” a break-through long-term care plan that gives security and support to former players and their families when it comes to brain-related illness.
Our caregiving contributor Sherri Snelling sat down with Sylvia Mackey, who has remained in the front lines of fighting dementia, to talk about her “longest yard” in caregiving.
When John Mackey, No. 88, was inducted into the Pro Football Hall of Fame in 1992, he was only the second tight end to receive the honor. Mackey, who helped the Baltimore Colts win a nail-biting Super Bowl in 1971, is still considered one of the best tight ends to ever take the field. But his wife – on the sidelines his entire career –also became a warrior at the center of the action.
Little did either John or Sylvia know that day in 1992 that 14 years later, John’s toughest battle would be fought off the field. At age 65 John Mackey was diagnosed with frontotemporal dementia (FTD), a degenerative disease caused by the rapid deterioration of the frontal and temporal lobes of the brain.
What makes Sylvia’s story one of inspiration is that this diagnosis could have sacked her (in football terms). But she didn’t let this devastating news knock her down. That’s all the more miraculous considering the amount of heartbreak she experienced as a caregiver.
One incident that highlights the special challenges that dementia caregivers face was played out at the Baltimore/Washington International Airport.
“John and I were on our way to the Super Bowl – we never missed one and I was determined this was something we were going to continue to do – it always made John happier as we got ready for these annual trips,” Sylvia recalls.
But this year was different. There was an incident with the TSA airport security that almost took them both down – literally. Her husband, proudly wearing his Super Bowl ring and trademark cowboy hat, refused to remove these items and place them on the conveyor belt to be scanned. In his mind, he did not understand that there had been a 9/11, he did not understand why the security agents did not recognize him, and ultimately he thought they were trying to rob him of his precious possessions.
As John grew more frustrated, the agents, unaware of his diagnosis, thought he was just being a belligerent traveler. They grew increasingly irritated and finally tackled him, but not after chasing the six-foot two-inch 220-pound former football player who dragged the agents several feet through the airport until several more agents joined in, handcuffed him and took him to jail.
All the while, a tearful and frightened Sylvia was trying her best to explain to the agents and curious onlookers that her husband was the NFL great and one of Baltimore’s favorite sons, John Mackey, and that his illness meant he had no ability to understand what was happening. She begged the officers to let her proud husband go. She collapsed while they dragged her confused husband away, and thought to herself, “I don’t know if I can do this anymore.”
When Sylvia caught up with her husband at the police station, John was back to his typical, jovial, social self – signing autographs for many of the police officers who finally recognized the NFL great. It was at this moment as her husband basked in the bright light of his fame, that she realized she could not give up on her husband or herself.
Instead of deciding that attending future Super Bowls or other travel would be out of the question, Sylvia contacted the head of TSA at Baltimore/Washington International. She explained her situation and asked for his help to allow her husband to travel – especially to the sporting events and autograph signings that he lived for and were important to maintaining some normalcy in their lives.
The TSA executive designed a plan with Sylvia to have John brought through a private area where they could scan him without incident and without his having to remove the items precious to him. In addition, the TSA executive also would contact his counterpart at the arrival airport to explain how similar treatment of John upon his return flight out of their airport would be helpful
And, these special plans are not just for those with famous last names. One lesson all caregivers can take form Sylvia’s travel strategy is to plan ahead and ask a lot of questions. Most airports will work with caregivers on the special travel needs of their loved one.
Sadly, John Mackey lost his battle with dementia and passed away in 2011 at the age of 69. A few years before that, Sylvia had written a passionate letter to then NFL Commissioner Paul Tagliabue asking for more support for retired players when it comes to their long-term care (LTC).
In his decade-long career, Mackey made about $500,000 – a salary that many back-up players make in one season today. The LTC plan was adopted by the NFL in 2007. The “88 Plan,” named to honor Mackey’s jersey number, provides retired players suffering from Alzheimer’s disease, dementia, ALS or Parkinson’s disease with $88,000 annually for long-term care or adult day care or $50,000 to secure care at home.
Today, Sylvia is a board member of the Association of Frontotemporal Degeneration (AFTD) and speaks to caregivers across the country about the impact of dementia on families. Sylvia’s message to all caregivers is the same her husband used to be a star on the football field: “Prepare. Prepare. Prepare.”
And don’t give up.
Sherri Snelling, CEO and founder of the Caregiving Club, is a nationally recognized expert on America’s 65 million family caregivers with special emphasis on how to help caregivers balance “self care” while caring for a loved one. She is the former chairman of the National Alliance for Caregiving and is currently writing a book about celebrities who have been caregivers that will be published in January, 2013 by Balboa Press, an imprint of Hay House Publishers. You can find more information at: www.caregivingclub.com.