Feb 032012
 

As millions tune in to the Super Bowl this Sunday, I am cheering for one football wife who tackled her husband’s dementia with a game plan to keep their lives as normal as possible and in the process found her calling as a caregiving advocate. Her passionate plea to the NFL, one of the most powerful organizations in sports, 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.

While this story is about caregiving, football and dementia, at its heart, this is a love story.

For Love of the Game . . . and the Man

When it comes to the gladiators of the gridiron, he was the Charlton Heston or Russell Crowe of his day. But, in the end, it would be his wife – on the sidelines of his entire career – who would become the warrior at the center of the action.

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. He was and still is considered one of the best tight ends to ever take the field. In fact, Mike Ditka, himself a Hall of Fame player and the first “pure” tight-end to be inducted into that rare club of exceptional players, stated that Mackey should have been first.
As a Baltimore Colt, where he played all but the last year of his career, John scored one of the most famous plays in NFL championship history. It was Super Bowl V played in 1971, that John caught the nail-biting pass from quarterback Johnny Unitas that first careened off the hands of the opposite team’s player, grazed the fingertips of his teammate and finally wound up safely in the arms of John who then ran it for a then- record 75-yard touchdown. It was this decisive play that helped the Colts beat the Dallas Cowboys and won John his coveted Super Bowl ring.

Twenty-one years later, as John took his place in football’s pantheon of great players for his Hall of Fame induction ceremony, right by his side was the woman who had been in that same spot since his college playing days, his wife, Sylvia. Theirs would prove to be a true love story, challenged only by a devastating medical diagnosis.
Little did either John or Sylvia know that day in 1992 that 14 years later, John’s toughest battles would be fought off the football field with his lovely wife serving as both tackler and blocker. 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.

Tackling Dementia

What makes Sylvia’s story one of inspiration is that this diagnosis could have sacked her (in football parlance) but instead she did not let this devastating news knock her down. 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,” said Sylvia.

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 they did not recognize him, and ultimately he thought they were trying to rob him of his precious possessions.

As John grew more frustrated with the TSA agents who, unaware of his diagnosis, thought he was just being a belligerent traveler, the agents 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 off to jail.

All the while, a tearful and frightened Sylvia was trying her best to explain to the agents and the curious onlookers that her husband was the NFL great and one of Baltimore’s favorite sons, John Mackey, that his illness meant he had no ability to understand what was happening, and ultimately 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.”

Hemingway wrote that courage is grace under fire. 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. That is when her courage took flight.

Instead of deciding that attending future Super Bowls or other travel would be out of the question, Sylvia got to work contacting 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 truly lived for and were important to maintaining some type of 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 items precious to him. In addition, the TSA executive also would contact the TSA executive at the arrival airport to explain how similar treatment of John upon his return flight out of their airport would be helpful to avoid any similar, dramatic incidents that neither party wanted.

And, these special plans are not just for those with famous last names. One lesson all caregivers can take from 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 ones.

The Final Play

Sadly, John Mackey lost his battle with dementia and passed away in 2011. A few years before losing her husband, 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 championed by current Commissioner Roger Goodell and was adopted by the NFL in 2007. The “88 Plan,” was named to honor Mackey’s jersey number and 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.

As the Giants and Patriots prepare to square off in Indianapolis in Super Bowl XLVI, Sylvia’s message to all caregivers on this game day – and every day – is to “Prepare. Prepare. Prepare.”

This is an excerpt on Sylvia Mackey’s story from Sherri Snelling’s book on celebrity caregivers and the lessons of love and caring that will be published in November, 2012.
©2012 Sherri Snelling

Learn More:

About Blog Author Sherri Snelling

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.

  45 Responses to “The Love Story of a Football Wife Who Tackled Dementia”

  1. beautiful story. My mom passed away from Alzheimers and it is truly a devastating disease.

  2. i love this im going throught something like that now but it is about a RV MY HUSBAND WHEN HE WAKES UP LOOKS OUT HIS WINDOW SEEN HIS RV HE KNOWS HE IS IN IS HOME BUT SOME PEOPLE HAVE COMPLAIN ABOUT THE RV BECAUSE THE STICKER IS NOT GOOD NOW THE LAW IS LOOK AT IT I WENT AND TALKED TO THEM ABOUT IT THEY WANT ME TO MOVE IT BUT THAT WOULD CONFUSE MY HUSBAND IM TRY TO GET A STICKER ON IT I JUST HOPE THEY GIVE ME TIME PEOPLE THAT DONT CARE FOR SOMEONE WITH THIS JUST DONT UNDERSTAND LOVE TO ALL AND PRAYS

  3. What an awesome story!! I work in an Alzheimer's unit, sitting here with tears in my eyes thinking of how devastating this disease is for both the patient and the family. I am also a huge football fan and think Sylvia for her fight to get additional funds for the LTC of the players. God Bless

  4. Ms. Sylvia Mackey is truly an inspiration.God bless her!!!

  5. My husband passed away in December 2010 with the same dementia that Sylvia's husband had . I was his caregiver for 2 1/2 years before he passed away. We never got to enjoy our retirement together but I would not have had it any other way. This man my Ed was my life, and still is to this day. We need to find a cure for this terrieble disease.

  6. AMAZING CAREGIVE/WIFE/ADVOCATE!!! I KNOW PERSONALLY WHAT SHE WENT THROUGH EACH AND EVERY DAY. IT IS DRAINING ON THE CAREGIVER BUT YOU LEARN THAT IT IS ABOUT THE PERSON AFFLICTED. YOU LEARN TO CHANGE AND NOT CHANGE THEM. YOU LEARN TO SPEAK ALZHEIMER'S IN A WAY THAT NO ONE, OTHER THAN THE ONES TAKING CARE OF A LOVED ONE, KNOW HOW TO DO. I SALUTE EVERYONE THAT HAS OR IS OR WILL BE IN THIS POSITION. WE LOVE THOSE ONES SO MUCH THAT WE WOULD DO WHATEVER WE CAN TO TAKE CARE OF THEM.

  7. Sylvia, your love for your husband & your determination to fight for his dignity is truly amazing. I look forward to reading your book and the complete story.

  8. I love this story being that I can kinda relate to the story after taking care of my grandmother whom had Alzheimer which was not a easy task me not knowing how to deal with this or what to do its amazing how so many people suffer from this diseases but there is not very many programs or help support for this until I start researching and looking for more information on this that i realized that there should be more programs offered for this like therapy for the family and caregiver taking care of the person suffering from this and more talk on it to let people know that the people suffering from this disease is still human and that they are afraid because they dont understand whats going on hated to see my grandma whom was a very strong,outgoing,and independent person go through this was crazy but if i had to do it all over again I wouldnt hesitate to do it all over again

  9. What a great story! Both my parents had dementia, so I can truly relate to that moment when the real world collides with the world in their minds. My eyes are tearing up even now as I remember that look of panic, confusion and fear in their eyes as people who lived their lives doing the "right" thing, being respected (and in John's case revered), and treating people well are disrespected or treated as if they're idiots — or worse, criminals. I applaud Sylvia and the NFL for this constructive resolution to one aspect of these life and dignity-robbing diseases.

  10. What a great story! People don't realize what it takes to care for someone with this disease.

  11. Oh did this hit home. My father was a reff for high school and collage foot ball and basketball,when we found out that he had Alzheimers we did not know what to do or how to do it. Then Alzheimers resources came in to our lifes,what a God send!!!! We lost Dad Feb.23 2005,but what my Mother and I learned along the way will stay with us forever,his name was Stan Staneff and we sure miss him,no one who has never delt with this can really understand,I know you do and God bless you for that!!!! My name is Kathy Staneff and I am proud to be the daughter of such a wonderful man.

  12. Lost my mom 2 years ago to this horrible disease. I took care of her in my home for 5 years after my dad died. I sat and watched her deteriate day by day. My mom survived the Holocaust but couldn't f ight this disease. As a caregiver it tore me apart. No one can understand unless they themselves have gone through it. I applaud Sylvia for sharing her story.

  13. My name is Cindy Herch and my stepdad we believe he is getting dementia. Do you no how we can have it checked without him nothing about it. Thank You

    • Take your stepdad to his general practioner and ask them to test for demetia. They will send him to a specialist for a diagnosis….Start now securing help in your area. If he is a veteran, funds are avaible. May God be with you.

  14. It takes nothing away from Sylvia Mackey's courage and devotion to remember that the NFL was intransigent on this subject for years and years, even as the scientific evidence piled higher and former players doomed to years of dementia care pleaded for more help for themselves and their families. If the NFL had taken better care of its players, overcome its self-interested denial to make the game safer, invested in safety when its owners were pocketing many millions of dollars, families might not have so great a need to "prepare, prepare, prepare." Players have committed suicide because of the brain injuries sustained on the field. The NFL is no supporter of caregiving and deserves little credit for the belated programs and adjustments it was virtually forced to make. What it deserves is widespread contempt, and pressure from fans along with families to do better.

  15. God's Richest Blessings on you, your board membership for AFTD, and the wisdom to share that gift you have with others affected by Alzheimers in their families or as caregivers! Such a creative solution to a check-in problem @ airports for those "hanging on" to those pocessions they still recognize and hold dear in their hearts! I thank-you for all you do and share!

  16. So glad she found help and got support. Everyone needs to kick in help for caregivers dealing with the mental and eventual physical loss of their loved ones.

  17. A great love story and amazing advocate!

  18. My mom has demita i have been taking care of her for six years now she is healthy other wise so she can live for a while because i go back to year 2000 that she had it but i see her deteriorate for six years now and it is heart breaking. she can't walk or talk anymore and all she does is sleep she dosn't eat much by mouth she is on feeding tube i hope and pray something comes around so we can get a cure for this dreaful deseas it's going to be millions of people walking around with this and no where to put them….

  19. Great story to read. Sylvia I give you allot of credit, I know it wasn't easy, my dad is suffering from the Alzeihmers disease and is devestating. It tears me up every time I see him and i cry everytime I leave from seeing him. My mom is taking it pretty hard but could no longer care for him, he is now in a nursing home which is even more hard for all of us. So give you allot of credit Sylvia for hanging in there. God Bless!

  20. What an inspirational story!

  21. What an inspiring story Ms Slyvia..I wish you all the best with your future endevors

  22. My mom was diagnosed with FTD in 2005 at the age of 53. This was a type of dementia that no medical professional in our area had ever seen, let alone treated. We fought the medical system for three years, going from psychologist, to psychiatrist, to neurologist before finally meeting a neuropsychologist 75 miles away that had the answers. A PET scan confirmed the suspected disease. It has been a long, hard road. We had to place her in a nursing home a month ago after caring for her in the home for years. Good for Mrs. Mackey for seeking a solution to her husband's barriers. As caregivers, we need to actively advocate on behalf of our loved ones so that they retain some sort of normalcy and dignity in their last days.

    • I know what you are going through. My mother also got dementia at age 53. I tried my best to keep her at home. I kept her for 3 years but it was too much. My husband and I was trying to take care of while raising 3 boys. She is in a nursing home and that was the hardest thing I have ever done in my life. She doesn't know my name now and a lot of times I leave crying
      I just pray that one day they will find a cure.

  23. My mom was is 67 and was just diagnosed this year with Pick's Disease or frontal lobe dementia .Unfortunately the disease is progressing quickly. Thanks for being an advocate for this HORRIBLE disease. Watching a family member live through trhis disease is awful.

  24. My father in law passed away last year from Alzheimers and my father at age 68 has been diagnosed with dementia, the fight is long and hard with health care and support. We need more stories like this one told, thank you Mrs. Mackey for sharing.

  25. My husband is 55 years old. 4 years ago he was diagnosed with vascular alzheimers. He got several concusions while playing football in high school and college. this was back in the 70's before they really understood all about concusions and plus he would not say anything about it when he got hit. He was a Running back and was drafted by the Patriots and Cowboys but never played. I praise the Lord he never played the pro's or he would not be alive today. Still we are now seeing more and more about the football players and what is happening to them. We are praying for the families of all of them that they would not have to go through this but we are with you for fighting this and are hoping that people will wake up and see the truth of what is really happening to these athletes.

  26. What an inspirational story! At the Clare Bridge Dublin a specialized memory care facility in PA, we know all too well how debilitating and challenging FTD can be. Providing daily moments of success to our residents is one of our main goals. Let's all keep praying for a cure for all those brain diseases that are robbing us of our loved ones.

  27. Sherri, Thank you for speaking out about this terrible disease. I too am a past caregiver for my Mom , who passed away 5 years ago with Alzheimer's. People should educate themselves and try to get others to educate and prepare. The impact it has on the whole family is more than any one person can deal with. I work in our local chapter , urging everyone to learn the 10 warning signs and helping to raise money to find a cure. The hope is that someday a cure will be found

  28. My husband was diagnosed with the same type of alzheimer's disease in 2008. I take care of him here at home. Some days are better than others. It's heart breaking to see such a strong, intelligent man, not to know how to write his name, know his own birthday or care for himself. It's a lonely life when your loved one has this disease, and worse when you know there is no cure. We've been married for 44 yrs. I hope I can continue to take care of him. I can't imagine putting him in a nursing home. He can still get around and loves to get out of the house and go in the car, but then he's exhausted. So we go for short drives. This is truly the hardest thing I have ever had to face. I love my husband dearly and will continue to be his caregiver for as long as I can.

  29. amazing GOD BLESS YOU!!!

  30. What a beautifully written story,the love and patience you had for your husband was wonderful,I have lost my mother and brother to this horrible disease,it is hard to understand unless you have lived with someone you loved and watched them become unable to care for themselves.I pray we recieve more funding for research
    We need a end to this disease……..

  31. My mother was found to have dementia on Thanksgivings weekend and it was hard for me to take. Especially being an only child and losing your dad to cancer as a teenager. My mother was a smart and beautiful lady both outside and inside and always put others before herself. It gets harder and harder every year but I have to remind myself that's its the condition that has taken over her and her personaily. Nobody not even her own family want to see because of fear and mostly me and the way I take care of her. So I am all by myself with two caregivers that watch her when I go to work. It has been a long hard road but I do the best I can and give all my trouble to God. Its tough but I will stick it out for as long as I can.

  32. i am sobbing reading all this…..my dearest dad has been diagnosed with picks dememtia just over a year ago now,we are a small but close family and it has tore us all up…….especially me as im so close with my dad and he has always been there for me,stong,intelligent,loyal lovely family man….and now this heartbreaking disease is changing and taking him slowly away from us..my mom is coping all on her own as he changes,and she got nobody to talk about it with ,only me,but i keep crying and breaking down about it,so im no good to her,im so scared of loosing my dad eventually to picks dementia……my heart is broken ans so sore……i dont know where to turn in my grief…………..my lovely lovely dad is changing…and my poor mom has to cope……….im sobbing reading abour mrs mackey and what happened at the airport……….how cruel life is……….

    • I appreciate your input on this quiet giant of loss to metanl health. I do not suffer from this but I have known some who did and a few who presently deal with this silent killer. For me, the statement of conditions of Alzheimer’s has limited direct family impact for me but this disease floats like a haze that can settle on anyone. I quietly consider this for me, if for any other reason, the direct and indirect impact of this disease would have on me and those I care for. Thanks for your effort, Tom Harrison

  33. i am sobbing reading all this…..my dearest dad has been diagnosed with picks dememtia just over a year ago now,we are a small but close family and it has tore us all up…….especially me as im so close with my dad and he has always been there for me,stong,intelligent,loyal lovely family man….and now this heartbreaking disease is changing and taking him slowly away from us..my mom is coping all on her own as he changes,and she got nobody to talk about it with ,only me,but i keep crying and breaking down about it,so im no good to her,im so scared of loosing my dad eventually to picks dementia……my heart is broken ans so sore……i dont know where to turn in my grief…………..my lovely lovely dad is changing…and my poor mom has to cope……….im sobbing reading abour mrs mackey and what happened at the airport……….how cruel life is……….

  34. This really hits home…..my mother suffers from Multi Infarct dementia which is very similar to Alzheimer's and progression is almost exactly the same. It is so difficult to watch her memories disappear especially the ones dearest to her heart. I recently had an issue with a business not allowing us to use a restroom and they actually made us leave and go to another business so that my poor, elderly, mother who suffers from advanced dementia could relieve herself. It breaks my heart that the world we live in is so closed minded and ignorant. God bless this family, it really brought tears to my eyes!

  35. My mom had alzheimers she wad diagnosed at 68. It was a rough road with her. I am a nurse and thought the medical community here where we live would be understanding. This was not the case. The treatment of her at times she went to doctor was “uncaring” . I was shocked. She was diagnosed with metastatic lung cancer in Dec. 2006, she died in Sept. 2007. It is the shunned scarey unspoken disease. More awareness and resources are paramount for us caregivers who have suffered in silence

    • Aging Together supports the remicmendatoons laid out in the Dementia State Plan, especially the collaborative aspect. We have seen this model result in significant improvements in services and community life for older adults and their caregivers when utilized in our region.Aging Together has replicated the work detailed in Goal III (Increase Awareness & Create Dementia Specific Training) and has found law enforcement and first responders to be especially responsive to education about dementia. We recommend this objective also include collaboration across the identified groups to help develop effective strategies toward supporting older adults with dementia and preventing abuse or neglect of these vulnerable Virginians. We also note that the faith community is not specifically referenced in the report, especially as a support to family caregivers and as part of the network that can effectively disseminate information to caregivers and older adults. The section addressing Dementia Specific Training should include an emphasis on training family caregivers. Hands on training using local resources for family caregivers has become a regular event in our region and is widely praised and utilized by family members. It has been an extremely affordable option when developed through collaborations among community resources. Aging Together is willing to share this model with other communities. We support the objective in Goal III regarding linking caregivers and people with dementia to information and services in rural communities. Implementation in these areas needs to take into account the differences between rural and urban Virginia. Even within rural communities there are wide discrepancies and personalities across localities. Aging Together has learned through our model that work can be done successfully on a local and a regional basis concurrently. Using this dual focus encourages buy in and engagement leading to more effective strategies and ultimately more genuine participation. Aging Together supports VDA as essential to creating more awareness of dementia in Virginia. We encourage building a broad stakeholder base, including the membership of the Commission. Goals and objectives fostering proactive, evidenced practices in care transitions across a variety of settings could be strengthened. We also recommend consideration of language and practices that reference and promote significant culture change including community based service delivery and person centered planning and service delivery. Thank you for the opportunity to comment on this plan. Aging Together offers our assistance in advocacy for and implementation of the plan as you move forward.

  36. What Sylvia did for her husband is so impressive! My father died from lewy bodies dementia. These related dementia illnesses are so devastating to the entire family.

  37. We always wonder about the long term coverage for players out there on the field, they sustain so much trauma! Our architecture firm, Pi Architects, specializes in Alzheimer's centers, among other types of senior living, and we're glad to share this article around the office. Sylvia's story helps to remind us why we need to stay on top of the best design and innovations for memory care residents.

  38. Yes, such a great story. My mom passed away with Vascular dementia last year. The ignorance about this disease is astounding. The simplest things in everyday life that we take for granted are frightening and strange to someone with dementia. The more the general public knows the gentler the time and quicker the cure.

  39. Recently I have travelled to New York City with my husband who has dementia for about 5 years. I have faced similar situation. Its very hard to ask a person with dementia to take off your shoes during inspection or take your belt off!! These are very unknown to a person with dementia and I think collectively something has to be done about it.

  40. Inspiring, I am a 24/7 caregiver and our most recent air travel was difficult enough to be our last. We traveled around the world, Now a short ride in our car is the most my spouse of 63 years can tolerate. The loneliness is perhaps the most difficult cross to carry. The frustration, the inability to tolerate medical or dental intervention, the resistance to activities of daily living makes living with my loved one difficult indeed. Since general health is good I have to ask God to let me be the survivor. Help from generous care givers has given me hope and strength . In my daily prayers I will ask God to send help and comfort to those who have shared their stories.

  41. This is a terrific story however many of us have loved ones who are everyday people who cannot get special treatment from TSA or any other security type officer. I have a mother and now a combat veteran husband who go through very similar instances each and every time we go anywhere. Both are too paranoid for their own good and most people do NOT understand this at all. Often I will call ahead but things will not get communicated to everyone it needs to and the trips end up being very frustrating anyway.

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