This one’s for you, Peyton Manning, and you, DeAngelo Williams, and you, Jadeveon Clowney, and all NFL players and alumni: Do yourselves a favor and pay attention to the Sam Huff case. Study the events in it and understand that what’s happening to him could happen to you. Start preparing for the day when you might become incapacitated as a result of your career and wind up with a court deciding where you live.
League figures say you have a 30 percent chance of contracting Alzheimer’s or dementia. You get lots of literature from the NFL Players Association about concussions and advice from agents and lawyers about estate-planning. But what you don’t get is the real picture of how people will treat you with a stigmatizing brain disease. Sam Huff is that picture. If you don’t want a judge to determine whether you have been abused, neglected or exploited and settle your family tensions, you better make a game plan.
The first step is admitting that you are vulnerable, not invincible. This is a hard admission for men in your league but necessary. Huff is a Hall of Fame linebacker who made a great living after football. He rose to a vice presidency at Marriott, dabbled in politics and got into thoroughbred horse breeding. For 30 years, he lived on his horse farm in Middleburg, Va., with his partner, Carol Holden. But in 2012 he had dementia diagnosed. As an NFL player, you are twice as likely as the general population to receive the same diagnosis.
Huff made what he thought were sound legal preparations and then went on with the life he had chosen. Then one day in March, his daughter picked him up at the farm, purportedly for a dentist appointment, and never brought him back home.
Catherine Huff contends it was for his own good. She’s seeking legal power to make all of Huff’s life and health-care decisions for him. His partner, Carol, has filed an emergency petition seeking to return him to his home and to her guardianship. A hearing is scheduled for Friday in Loudoun County Circuit Court.
Think it can’t happen to you? Of the 1,600 players in the NFL each season, more than 500 will contract a form of dementia. Look around in your dressing room and do the math: Fully 18 of the 53 men on the roster will get it. Either you or one of the men on either side of your locker.
Because you’re young and strong and tend toward denial, you don’t understand just what it means to lose your self-determination and become utterly reliant. But you have to look at Huff and realize that as a society we tend to treat once-formidable adults such as Huff as husks or easy marks or the way we once treated “retarded” children.
I spent two days calling the most highly regarded Alzheimer’s legal experts in the country for their recommendations on how NFL players should prepare for a potential diagnosis. How can you guard against having your future decided by a stranger and ensure you’re cared for as a person with a history, not a shell?
Below is their suggested blueprint for how to protect yourself. Consider it as important as your helmet.
One: Find a lawyer with specific experience in Alzheimer’s and follow his or her advice. Your contract or estate lawyer isn’t good enough. Alzheimer’s planning requires deep interdisciplinary legal knowledge, command of medical and criminal potentials. A dementia-savvy attorney will explain why you shouldn’t give your child or spouse durable power of attorney, without neutral oversight. Studies show at least half of dementia patients are abused, neglected or exploited in some way — and that nearly 60 percent of the time the perpetrator is a family member. Character isn’t hereditary.
Two: Don’t pit family against each other. Appoint a “trust protector,” a valued friend or associate with good judgment and independent means to monitor the durable power of attorney’s conduct. The idea is a relatively new one, proposed by estate attorney Danica Brustkern in a paper to the American Bar Association this winter, but it’s quickly gaining traction because power-of-attorney abuse is “epidemic,” according to Kerry Peck, author of the textbook “Alzheimer’s and the Law,” and a prominent Chicago attorney. A protector can ensure actions are in your interest, no one else’s.
Three: Legally state that if there is any change to your estate plan after your diagnosis, a medical evaluation will be required to ensure it’s your decision. Changes often are manipulations, especially if your power-of-attorney is a beneficiary.
Four: Legally designate that a geriatric care social worker must be employed to facilitate your care. Currently, families despair as they wander through a maze of agencies, facilities and services rife with ignorance. “The system creates more suffering,” said Laura Gitlin, director of the Johns Hopkins Center for Innovative Care in Aging. A geriatric care expert has the contacts, social service resources and experience to devise living arrangements and decent care and relieve the pressures on your distressed family.
Five: Decide what your wishes are and provide for them. If you want to live at home, study the optimal circumstances for living with dementia and set aside the money. “For someone with moderate to severe dementia, having familiarity in environment is very important,” Gitlin said.
But make a good plan B, in case your circumstances or feelings change. Gitlin observed, “It’s so hard when you’re in your 20s and playing at a high level to really understand what the potential consequences are. . . . But the sooner you start having those dialogues the better.”
A common response she hears to a diagnosis is, “I don’t want to live like that. I want it to be over.” But people adapt and find new meaning and quality of life. “Your viewpoint will change as you experience chronic illness,” she said.
You may actually decide you want to live in a facility; NFL Alumni is developing memory-care facilities in areas with high numbers of league retirees. Just make sure you mandate in your estate plan that it has a decent nurse-to-patient ratio and specifically trained Alzheimer’s care. Here’s how bad our national policy lags: “Memory-care” facilities in most states are not even required to train their caregivers in the disease.
There is no such thing as a bulletproof situation; Huff’s court date is evidence of that. But you can start by putting it all down on legal paper with a credible dementia-knowledgeable attorney.
“You really can’t be too specific,” Peck said. “You need to put someone in charge who you trust and hope that person loves you more than loves your money and will be diligent and stand in the way of these scenarios.”
Above all, realize that the Sam Huff family scenario isn’t an exception. It’s all too common.
“They aren’t that unusual,” Peck said. “They really aren’t.”
For more by Sally Jenkins, visit washingtonpost.com/jenkins.