Sylvia Mackey: Fighting dementia, in the NFL and across America

John Mackey's widow brings the story of her struggle with her husband's disease to Baltimore

November 13, 2011|By Sylvia Mackey

Oh, what a night! Late December in 1963. What a very special time for me — I married the love of my life, John Mackey.

My husband played for nine seasons with the Baltimore Colts. In the years following his retirement from the NFL, I noticed unusual changes in his behavior. My first reaction was to go through various stages of denial, because I didn't know what else to do. But finally I couldn't kid myself anymore. Many doctors' visits later, and nearly 30 years after John played his last NFL game, John was diagnosed with frontal temporal dementia, which meant that he had severe shrinkage of the left frontal lobe of his brain.

In educating myself about his diagnosis, I learned that that portion of the brain controls things like personality, emotion, memory and impulse control, and it is also the most susceptible to injuries like traumatic brain injury. Rather than leaving me feeling devastated, John's diagnosis actually made me feel relieved because I finally had answers explaining his behavior. And I knew I had to take action.

My first move was to change careers so John and I had a steady income and benefits. The second was moving us from California back to Baltimore, which we had come to consider home. The third was asking for help because my income and health insurance were simply not enough to take care of me, John and our daughter, who quit her job to move in with us and help take care of John.

I knew that John's need for round-the-clock in-home care, and eventually full-time skilled care, would lead to our financial ruin. I wrote a letter to then-NFL Commissioner Paul Tagliabue and simply told him my story. There was no need to embellish the details; rather, I just explained my new "normal" of dealing with John's illness, asking how the NFL could let things like this happen to their own. My plea was answered with the "88 Plan," which was named after John's college and NFL jersey number.

The 88 Plan now pays up to $100,000 per year for institutional care and up to $88,000 per year for in-home health care. It covers care for certain former NFL players who are affected by dementia, Alzheimer's disease, Parkinson's disease, and amyotrophic lateral sclerosis, or ALS ("Lou Gehrig's disease").

The responsibility of caregiving to those with disabilities too often falls on family members and those closest to the loved one requiring care. I can't help but think about all the other caregivers who struggle personally and financially. The burden can be so difficult that often caregivers die before their loved one being cared for. The Alzheimer's Association reports that there are more than 5 million people suffering from Alzheimer's disease and nearly 15 million caregivers who provide 17 billion hours of unpaid care, valued at more than $200 billion each year. While the 88 Plan provided a tremendous help for me and my family, there is no such support for the vast majority of dementia patients and their caregivers. This is simply unacceptable.

For the past year, I have been traveling across the country with an exceptional panel of speakers as part of a program co-sponsored by the NFL and Morehouse School of Medicine in Atlanta. It has meant so much to me to be able to share my story with other NFL wives and members of the public who struggle with so many of the same challenges I have encountered. Our program, the "NFL Community Huddle: Taking a Goal Line Stand for Your Mind & Body," comes to Baltimore today. We are on a mission to educate, motivate and mobilize communities to work together at a grass-roots level to address important issues like dementia, depression, financial and relationship stress, among others.

Sadly, my husband died on July 6, just a few months short of our 48th wedding anniversary. But he has left a legacy as the "poster boy" for dementia. I want all caretakers to know that they are not alone and that they should never underestimate their influence — that change can start with just one person. If you are a caretaker for a loved one with dementia or Alzheimer's disease, I encourage you to educate yourself, know the signs of dementia and other mental illnesses, know that you are not alone in your struggles, and above all, never give up hope.

Sylvia Mackey lives in Baltimore. Information about the NFL Community Huddle is available at

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