Meet the Hall of Fame Caregiver Who Changed the NFL

Sylvia Mackey, the widow of Baltimore Colts tight end John Mackey, is a powerful advocate for ex-players suffering from neurological disorders

By Sherri Snelling
Originally Posted On May 18, 2013

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Sherri Snelling, CEO and founder of the Caregiving Club, is a nationally recognized expert on America's family caregivers and the author of A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care (Balboa Press, 2013).

This column is adapted from Sherri Snelling's new book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care (Balboa Press, 2012).

With power, speed and skill to spare, Hall of Fame tight end John Mackey was a gladiator during his 10-year National Football League career, most of it spent wearing No. 88 for the Baltimore Colts. In Super Bowl V in 1971, he and quarterback Johnny Unitas combined for one of the most famous touchdowns in the game's history, a then-record 75-yard reception that deflected off the hands of two other players before Mackey secured it, and his team's victory over the Dallas Cowboys. To commemorate that win, Mackey began wearing a cowboy hat. It would become his trademark.

John was 60 years old.
 
Making Adjustments
 
Later, in 2006, the couple prepared for a trip to an annual autograph show. "We never missed one," Sylvia says, "and I was determined this was something we were going to continue to do. It always made John happy — he never once turned down anyone who wanted his autograph."

But this trip proved different. They never made it on the plane.

At the Transportation Security Administration checkpoint, John refused to put his Super Bowl ring or cowboy hat on the scanner's conveyor belt. He did not understand why he had to do so or why the agents didn't recognize him. He thought they were trying to rob him. Sylvia tried to explain to the agents who John was and why he couldn't understand what was happening. Finally, though, he charged through the scanner. Several agents pursued him, but struggled to tackle the 6-foot-2-inch, 220-pound former football great. He dragged them for several feet until they could bring him down. The sight of her husband, handcuffed and taken away in an ambulance for evaluation, was almost more than Sylvia could bear.

She thought to herself, "I don't know if I can do this anymore." Then she collapsed.
 
At the hospital, John quickly returned to his jovial self as Sylvia recovered, even signing autographs for doctors and nurses who recognized him. Seeing her husband again basking in the light of his fame, she realized she could not give up on him.
 
Such special plans are not just for Hall of Famers. Any family caregiver can do what Sylvia did. Airports will work with families to accommodate their loved ones' special needs, but you can't wait until you get to the airport to ask. Call ahead and write down the names of whoever helps you so you can reference the plan when you arrive at the terminal. The Society for Accessible Travel and Hospitality can be a valuable resource, offering tips and checklists for those traveling with someone who has Alzheimer's disease or similar conditions.
 
The Final Play
 
As John's disease progressed, he needed 24-hour supervision. Sylvia arranged for him to move into an assisted-living facility that, fortunately, was five minutes from their home. But the cost was daunting. Over his 10-year career as one of the NFL's most valuable players, John earned less than $500,000 — today, most bench players in the league collect more than that in a single season. He was receiving a monthly pension of $2,450 from the NFL Players Association, but the costs of his care were escalating beyond that. To supplement his pension, Sylvia went to work as a flight attendant for United Airlines, a job she still has today.
 
She also wrote a heartfelt, three-page letter in 2006 to then-NFL commissioner Paul Tagliabue in which she pleaded with the league to do more to help retired players and their families cover the costs of home care and care facilities. She described John's condition in detail, calling his dementia "a slow, deteriorating, ugly, caregiver-killing, degenerative, brain-destroying tragic horror." And she detailed her financial struggles.

The letter had a profound impact on the league's attitude toward its ex-players, as did swelling media coverage of the previously underreported crisis of neurological disorders among retired football players, which many neurologists believe are caused or exacerbated by head injuries or multiple concussions during the players' careers. The NFL quickly reached agreement with the players union to provide additional coverage and benefits for former pros who have diagnoses of dementia, Alzheimer's disease, Parkinson's or ALS.

When the agreement was signed, a league official called Sylvia to tell her that the new program would be called the 88 Plan, after the number Mackey wore for the Colts. The new benefit allows qualifying retired players and families to collect $88,000 annually for institutional care or $50,000 for in-home care assistance. Along with other 88 Plan benefits, families could receive up to $100,000 a year. The league has paid out $16 million in 88 Plan grants since the program's launch in September 2007.
 
John Mackey died on July 6, 2011, at age 69. Today, Sylvia takes his place at gatherings of NFL players and their families. She attends every Super Bowl — she's in New Orleans this week — wearing a necklace with her initials and the number 88. As a member of the Association of Frontotemporal Degeneration's board, she remains a passionate advocate for FTD awareness, helping others understand the plight of caregivers like herself. And she keeps in touch and offers support to other caregiving spouses of retired players.
 
On the field, John Mackey earned his place in the annals of pro football. Off the field, Sylvia Mackey has earned her own place in the Caregiver Hall of Fame.