NFL Wife Tackles Dementia & Changes the Game

Sylvia Mackey bio photoDuring the fall Mondays typically mean Monday Night Football.  But the heroes are not always found on the gridiron – sometimes it is the caregiver on the sidelines whom we should applaud.  Sylvia Mackey, wife of NFL Hall of Fame player John Mackey of the Baltimore Colts, is one of those heroes.

Her caregiving story is about dealing with her husband’s dementia for more than a decade. She also gained the attention of one of the most powerful organizations in sports, the National Football League (NFL), which resulted in the 88 Plan, a break-through health care benefits plan that gives security and support to former players and their families when it comes to brain-related illness.  You can also read a version of this story on PBS Next Avenue.

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

john-mackey nfl baltimore colts from WebWhen 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 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 the NFL championship history.  It was Super Bowl V played in 1971, when John caught the nail-biting pass from the 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 the 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 toughtest 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

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What makes Sylvia’s story one of inspiration is this diagnosis could have sacked her (in football jargon) but instead she did not let this devastating news knock her down.  One incident that highlights the special challenges dementia caregivers face was played out at the Baltimore/Washington International Airport.

“John and I were on our way to an autograph signing – 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,” says 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 (hallmark of his Super Bowl win over the Dallas Cowboys), refused to remove these items and place them on the conveyor belt to be scanned.  In his mind, he did not understand 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.

While a tearful and frightened Sylvia explained to the agents and curious onlookers 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 ultimately convinced the agents to call an ambulance and they took him off to a local hospital. 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, “Courage is grace under fire.” 

When Sylvia caught up with her husband at the hospital, John was back to his typical, jovial, social self – signing autographs for many of the doctors and nurses who recognized the NFL great.  It was at this moment as her husband basked in the bright light of his fame, 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 autograph signings or Super Bowls 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 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 the 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.

Now before you think these special plans are just for those with famous last names – this is a lesson learned for all caregivers from Sylvia’s story. If you plan ahead, you can use Sylvia’s travel strategy to continue to travel – most airports will work with caregivers on the special travel needs of their loved one.

The Final Play

NFL PlayerCare

Sadly, John Mackey lost his battle with dementia and passed away in 2011.  A few years ago 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 many back-up players make in one season today.  The health benefits plan was championed by current Commissioner Roger Goddell and was adopted by the NFL in 2007.  The NFL named it the 88 Plan, to honor Mackey’s jersey number.  The plan provides retired players suffering from Alzheimer’s disease, dementia, ALS or Parkinson’s disease with $100,000 annually for long-term care or adult day care or $88,000 annually 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. Her message to all caregivers is a mantra her husband used  during his legendary football days – “Prepare.  Prepare.   Prepare.”

This is an excerpt on Sylvia Mackey’s story from Sherri Snelling’s book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care.


Alzheimer’s Speaks November Radio Programs

In celebration of National Caregiver Month and National Alzheimer’s Month in November, two of Sharecare’s Top 10 Alzheimer’s influencers, Sherri Snelling (#4), Founder and CEO of Caregiving Club and Lori Le Bay (#1), Founder and CEO of Alzheimer’s Speaks, are co-hosting special programs for Lori’s Alzheimer’s Speaks Radio Show.  Sharecare is the health and wellness experts site started by Dr. Oz.

Tune in live every Tuesday at 10am CT to join the hosts and their expert guests for “Let’s Talk Tuesdays” at:

www.blogtalkradio.com/alzheimersspeaks

 Nov flyer

Read the press release here:  Caregiving Club Joins Alzheimer’s Speaks to Celebrate Natl Caregiving Month press release 10.30.13

Read more about Alzheimer’s Speaks – click here

Read more about Caregiving Club – click here

Read more about Sharecare – click here

Following is the line-up for the “Let’s Talk Tuesdays” radio guests:

Tuesday, November 5

Lori and Sherri kick-off the “Let’s Talk Tuesdays” with Lori providing information about the growing trend of Memory Cafes for early on-set dementia patients and their family caregivers and Sherri discussing the tipping points that caregivers face and how to better balance caring for themselves while caring for loved ones.

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Click here to listen to the November 5 podcast

Guest on Tuesday, November 12

2013 Brooks Kenny (2)Brooks Kenny is Executive Vice President and Chief Marketing Officer of Lotsa Helping Hands

Brooks is a nationally recognized speaker in cause marketing and strategic partnering.  She is the force behind the company’s enterprise and marketing efforts working with more than 50 nonprofit partners across the country. She directs the companies branding, marketing and social media efforts by developing partnerships and creating business growth.

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Click here to listen to the November 12 podcast

Guest on Tuesday, November 26

Gary Kaye in the boom boxGary Kaye is Founder and Chief Content Officer for “In the Boom Box”

Gary launched In the Boom Box as the online site dedicated to technology for boomers.  He is an award-winning journalist who has been covering technology since IBM introduced its first personal computer in 1981.  Gary has reported on technology for NBC News, ABC News, Ziff Davis, CNN, and Fox Business Network.  He is a regular contributor to both AARP’s web site and to AARP radio, Huffington Post as well as to a handful of other print and web-based publications where he specializes in issues involving boomers/seniors and technology.

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Click here to listen to the November 26 podcast

Guest on Tuesday, November 26

Ruth Curran Cranium CrunchesRuth Curran is founder and creator of Cranium Crunches

Ruth’s passion, intense study and exploration has been the connection between the brain and daily functioning, particularly what happens to this connection as a result of aging, stress, and disease/injury.  She has developed a wide variety of thinking games and apps that incorporate photo imagery and short exercises that promote stress as a path to better thinking and functioning.  Her games inspire players to imagine, use strategies, and focus while building new neural pathways reducing stress.  Ms. Curran’s background includes work in nonprofit health clinics and homecare providing insights into those suffering from brain related diseases and their family caregivers.  Click here to find the RELAX app created by Cranium Crunches and promoted by Caregiving Club as a wonderful way for caregivers to find balance and better health .

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Click here to listen to the November 26 podcast

Other “Let’s Talk Tuesday” guests include:

Eric Hall, Chairman of the Board of the newly launched Alzheimer’s Global Initiative

Cathie Borrie, author of The Long Hello, will talk about adapting her memoir for the stage with award winning director and playwright, James Fagan Tait

Daniel & Ellen Potts – Let Me Be Your Memory is the first ever middle school language arts/Alzheimer’s awareness curriculum

Stephen Johnston of the GENerator program and Walter Greenleaf Stanford Center on Longevity will discuss a global student design challenge to help early-stage dementia sufferers with safety and independence

Karen Love CCAL will discuss Advancing Person Center Living & Dementia Action Alliance on building alliances for person-centered care

November is National Caregiver Month

Atlas Caregiver MonthNovember and all year long we celebrate and honor the 65 million Americans who are caregivers.  Just like Atlas, the weight of the world is being carried on caregivers’ shoulders. Caregiving crosses all socio-economic boundaries — race, religion, age, gender, geographic location, income level – caregiving is a role most if not all of us will play in our lifetimes.  Read our new blogs all month on how caregivers can balance self-care while caregiving and revisit some of our past blogs about the different types of caregivers here:

 

 

 

 

 

 

Caregiving Children:

Caregiving’s Lost Generation: The Nation’s Children for Huffington Post

Caregiving Men:

Increase of men as caregivers for Forbes.com

Sandwich Generation Caregivers:

7 Ways the Sandwich Generation can beat burn-out for the Examiner.com

Mars vs. Venus On Caregiver Stress for Huffington Post

Sibling Caregiver:

The Sibling Caregiver for PBS Next Avenue

Caregivers of Veterans:

Caregivers caring for those with PTSD and TBI for Huffington Post

Working Caregivers:

Employers must do more to support working caregivers for Huffington Post

Caregivers of Parents:

Goldilocks Syndrome for Forbes.com

Caregiver Tipping Points for PBS Next Avenue

What’s Your Caregiving IQ? for PBS Next Avenue

How to Prepare for Disasters When Older Parents Live Far Away for the Examiner.com

November is National Alzheimer’s Awareness Month

Finger Purple String dreamstime_16285962 (2)In November we want everyone to remember the 5.4 million Americans living with Alzheimer’s disease and the 15 million caring for them.  Every 68 seconds, someone new is diagnosed with Alzheimer’s disease.  One of every two Americans over age 85 will develop dementia and Alzheimer’s disease is the #1 reason children under 18 become a caregiver for a grandparent or parent.  Read our blog articles about Alzheimer’s disease here:

Caregiving’s Lost Generation: The Nation’s Children for the Huffington Post

Alzheimer’s Prevention Initiative Campaign

Caregiving Conversation Between Your Heart and Your Head for the Huffington Post

Dementia Caregiver Stress and Long-Distance Caregiving for PBS Next Avenue

The Longest Day honors the long good-bye

Music of the Night – 2013 Alzheimer’s Association “A Night at Sardi’s” Event

Stars Take Center Stage to Fight Alzheimer’s disease – 2012 Alzheimer’s Association “A Night at Sardi’s” Event

Watch here to view the celebrity interviews on the purple carpet from the “A Night at Sardi’s” Gala Events hosted by the Alzheimer’s Association Los Angeles Chapter:

2012 celebrity interviews from “A Night At Sardi’s”

2013 celebrity interviews from “A Night at Sardi’s”

 

Honoring Veterans & Their Caregivers November 11

Saluting Soldier dreamstime_m_7996079 (2)Every November 11 we commemorate Veteran’s Day – the brave men and women who protect our freedom and American way of life.  Our blogs feature the heroes on the homefront – the 10 million Americans who are caregivers of our nation’s veterans, of which 7 million are veterans themselves.  Read our blogs about the caregivers of veterans here:

 

 

 

Heroes on the Homefront – Veteran’s Caregivers for Examiner.com

Caregivers caring for those with PTSD and TBI for Huffington Post

Enlist now to help caregivers of veterans

Libby Hewes- A Veteran’s Caregiver Goes from Newlywed to Nurse for Caring.com

Rosalinda & Alain Babin – Boomer Parents Proud of Wounded Warrior Son for Caring.com

Boomer Parents Caring for a Veteran Son with TBI for PBS Next Avenue

November is National Diabetes Awareness Month

Read our articles about diabetes prevention and awareness:

Carousel of Hope Ball Honors George Clooney

Watch the celebrity interviews from the red carpet of the Carousel of Hope Ball for Diabetes Awareness

PBS Next Avenue Articles

PBS Next Avenue together

Following are all of Sherri’s articles for PBS Next Avenue:

17 Essential Books for Caregivers

90-Year-Old Billionaire David Murdock Doles Out Advice

Are You a Caregiver or Just a Good Child? (Sherri Snelling quoted in article)

Caregiver Tipping Points

The Emmy Awards We’d Give – TV’s Best Caregivers (2012)

The Emmys We’d Award – TV’s Best Caregivers (2013)

Employers must do more to support working caregivers

Finding Affordable Home Care for Your Parents (Sherri Snelling quoted in article)

For Caregivers, New Tracking Technology Offers Peace of Mind

Healing Power of Pet Therapy

Help Your Parents Join the Aging in Place Revolution (Sherri Snelling quoted in article)

Holly Robinson Peete’s Most Challenging Role – Sandwich Generation Caregiver

How Online Volunteers Support Caregivers

How Strong is Your Living Will? (Sherri Snelling quoted in article)

How to Avoid the Goldilocks Syndrome

How to Care for Your Parent Without Losing Your Job (Sherri Snelling quoted in article)

How You Can Combat the Senior Hunger Crisis

Meet the Hall of Fame Caregiver Who Changed the NFL

New Report Highlights Stress of Long Distance Caregiving

The Osmond Family’s Greatest Act – Winning the Daily Battle Against MS

Patient Navigators – New Help for Caregivers

PBS Powerful Expose on Assisted Living (Sherri Snelling quoted in article)

Rise of Men as Caregivers

Rosalynn Carter – A Pioneering Caregiving Advocate Says More Must be Done

The Sibling Caregiver

Social Media Dangers for the Modern Caregiver

Suze Orman’s Lessons Learned on Long Term Care for Her Mom

A Victory for Alzheimer’s Patients and Caregivers (Sherri Snelling quoted in article)

The Village Movement – Redefining Aging in Place

What Lies Ahead for the Nation’s Caregivers?

What Obama’s Re-election Means for Caregivers

What Parents of Wounded Veterans Need

What’s Next in Caregiver Technology

What’s Your Caregiving IQ?

When Parents Face Driving Retirement – Alternative Senior Transportation

Where do the Candidates Stand on Caregiving?

Why Caregivers Need to Plan for the Worst – Emergency Preparedness

Why Laughter is Crucial for Caregivers

Why You Need to Make Your End-of-Life Wishes Known

 

Huffington Post Articles

Huffington-Post-Logo3Following are Sherri’s articles for Huffington Post:

8 Ways to Volunteer to Help America’s Largest Volunteer Health Care Work Force: Family Caregivers

An Essential Caregiving Fairy Tale: Sleeping Beauty

Caregiver RX for Stress: 3 Steps to Me Time Monday

Caregiving Conversation Between Your Heart and Your Head

Caregiving Goes to the Oscars (2013)

Caregiving’s Lost Generation: The Nation’s Children

Caring for Those Heroes with Invisible Wounds

Creating Company Culture that Cares About Caregivers

How to Manage the Sandwich Generation Juggling Act – 8 Childish Things Caregivers Should Do

Let the Caregiving Movement Begin with the Caregiver Bill of Rights

Mars vs. Venus On Caregiver Stress

Rizzoli & Isles Creator is on the Case

Examiner Articles

examiner_LogoFollowing are Sherri’s articles for Examiner.com:

7 Magnificent Ways the Sandwich Generation Can Avoid Burn-out

12 Tips to Help Prevent Parents from Falling

Caregiving Matchmakers – How to Find “The One” for In-Home Care

Glenn Close on Mental Illness Awareness

Heroes on the Homefront – Caring for a Veteran

How Dogs Help Those with Dementia

How Friendships Help Caregivers Cope

How to Prepare for Disasters When Older Parents Live Far Away

Southern California Hosts World’s Top Minds on Dementia Care

Caring.com Caregiver Profiles

Caring dot com

Following are the caregiver profiles Sherri has contributed to Caring.com:

Debi Cacace – Staying Connected With Her Father-in-Law Through Technology

Diane McGunigle on Women, Caregiving and Heart Health

Dr. Sally Brooks –A Doctor, A Daughter, A Caregiver

First Lady Rosalynn Carter – The Caregiving Pioneer

The Health Risks of Being “The Good Daughter

Libby Hewes- A Veteran’s Caregiver Goes from Newlywed to Nurse

Rosalinda & Alain Babin – Boomer Parents Proud of Wounded Warrior Son

Sara Ballantine – The Magic of Caring for Her Dad

Sarah Abbott and Kate Stukenberg – Blondes vs. Brunettes in the Fight for Alzheimer’s

The Working Caregiver – A Culture of Care at Work Makes All the Difference

 

Forbes Articles

Forbes

Following are Sherri’s articles for Forbes.com:

Caregiver Tipping Points

David Murdock – 90-year-old billionaire and caregiver

Goldilocks Syndrome

Rise in Men as Caregivers

Social Media Dangers for the Modern Caregiver

What Suze Orman :earned Caring for Her Mother

Suze Orman’s Lessons About Long Term Care After Caring for Her Mom

Suze Orman and mom AnnAmerica’s financial guru, Suze Orman dispenses expert advice via TV, radio, her books and her Web site on how to manage your money and make it work for you.  But when she became a caregiver to her mother, she learned even experts encounter challenges that can cost you.  Read Sherri’s interview with  Suze Orman appearing on Forbes.com and PBS NextAvenue.org on what you may not know about long term care.

Glenn Close Wants to Change Your Mind About Mental Illness

All caregiving can be exhausting, frustrating, overwhelming and stressful but for the caregivers of those with a mental health issue the societal stigma you face creates additional challenges.

According to the National Alliance of Mental Illness (NAMI), 1 in 4 adults in the U.S. has a diagnosable mental disorder and the average age is 14 for the on-set of mental illness.  NAMI is leading the national awareness campaign —  the National Mental Illness Awareness Week is October 6-12 –  first established by the U.S. Congress in 1990. The campaign also includes National Depression Screening Day on October 10.

Shining a Spotlight on Mental Illness

Glenn Close dreamstime_m_20156298 (2)Oscar-nominated and Emmy and Tony Award-winning actress Glenn Close wants to help lift the veil of mental illness to reveal the myths and eliminate the shame associated with bi-polar disorder, schizophrenia, post traumatic stress disorder (PTSD) and other mental health issues through a national public service campaign.

Glenn has become a champion who is shedding light on the dark world of bi-polar disorder and schizophrenia which affects her sister and her nephew respectively.  Appearing on the TV morning show, Good Morning America, Glenn said, “I believe we need to be having discussions around mental illness and talk as openly as we do about other diseases such as cancer or diabetes.”

Starring alongside her sister, Glenn launched a public service announcement (PSA) campaign on mental health issues created by BringChange2Mind, the nonprofit organization Glenn helped found to eliminate the discrimination felt by those with mental illness and their family caregiver.  Her hope is increased awareness will get more people to seek help.

Caregiver Depression a Slippery Slope

In a study of caregiver health risks, the National Alliance for Caregiving reported 91 percent of those caregivers whose health was in decline reported suffering from depression over caring for a loved one.

In addition, the Centers for Disease Control and Prevention (CDC) reported in May of this year deaths from suicides since 2009 had surpassed deaths from motor vehicle crashes in the U.S.  The report also found the increase in suicides were most significant among the baby boomers – for men age 50-59 years old an increase of 47-49 percent and for women age 60-64 an increase of 59.7 percent. One potential cause cited for this increase was caring for an older, ailing parent.

We also know that for those 15 million Americans caring for a loved one with Alzheimer’s disease, the risk of becoming isolated from friends, other family and life’s typical social connections is a common issue based on how loved ones are shamed by their diagnosis.

According to the Alzheimer’s Disease International’s World Alzheimer Report, about 25 percent of people with dementia report hiding or concealing their diagnosis due to the stigma surrounding the disease, and 40 percent say they are often excluded from everyday life.

Sherri’s Other Articles on Mental Health

Read here about caregivers of veterans with invisible wounds of PTSD and TBI

Read here about  Catherine Zeta Jones living with bi-polar disorder