In this age of sharing our lives on social media, caregivers struggle with how much or how little information to divulge. In her article for Forbes and PBS Next Avenue, Sherri Snelling talks about her personal caregiving experience with a social media assault – read about the Social Media Dangers for the Modern Caregiver.
In this interview for Caring.com, Sherri talks to a caregiver who was a good daughter, a good niece and good mother – caring for everyone around her but neglecting her own health needs. Studies show caregivers typically put their own health at risk and are twice as likely to develop chronic illness earlier in life due to the prolonged stress of caregiving.
Read Sherri’s articles on how caregivers can:
I first met Joan Lunden on the set of a special TV program Joan hosted for RLTV, “Taking Care with Joan Lunden,” where Joan interviewed me as an expert on caring for an older loved one at home. I turned the tables on Joan and interviewed the famous interviewer for this story which is excerpted from my book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care.
For 17 years throughout the 1980s and 1990s, she woke us all with “Good Morning America” as co-host of ABC-TV’s national morning show. But, it was only six years ago that Joan Lunden, the sunny, blonde, California-born and raised TV journalist received her own wake-up call.
She remembers it like it was yesterday. In her words, “It 100 percent shook me up.” It was back in 2005, that her brother Jeff, who had long suffered from Type II diabetes, passed away. Joan had been caregiving for both her ailing brother as well as her then 87-year-old mother, Gladyce. While her brother suffered the ravages of diabetes – blurred vision, headaches, operations on hands and feet, etc. – her mother, Gladyce suffered from signs of dementia and had several mini strokes over the years. For both their safety and Joan’s peace of mind, she had purchased a condominium in the Sacramento, California area where Joan had grown up and paid for them both to live there together.
Meanwhile, Joan lived across the country with her home base on the East Coast where she was raising two sets of twins under the age of 10 with her second husband and playing “empty nest” mom to her three older daughters from her first marriage. In addition, she had not slowed down since leaving “Good Morning America” in 1997, traveling the country as a spokesperson on healthy living, authoring several books, and managing a growing business focused on healthy living.
Joan was both a Sandwich Generation caregiver – one of the 24 million Americans caring for children and a parent simultaneously and thus, sandwiched between caregiving duties – and a long-distance caregiver. More than eight million caregivers care for a loved one long distance – whether they are two hours away or across the country as in Joan’s case. This makes caregiving more difficult – you are not there every day to see the small things which can be warning signs that something is changing and your loved one needs more care.
Although she mourned her only brother’s passing, it was not his death that rocked Joan’s world. It was the realization that her mother’s dementia was so much worse than even she knew.
“My mom had ‘sundowners,’ a typical symptom of dementia and Alzheimer’s where the person becomes irritated, irrational and sometimes violent as the sun is setting,” explained Joan. She also showed signs of paranoia especially after Joan moved her mother into an assisted living facility.
“Mom was afraid to go downstairs and visit with the other residents, they frightened her and yet she could not tell us why,” said Joan.
Joan soon realized that she had been overlooking her mother’s real needs and issues. “It is easy to overlook things when you live far away from your loved one,” says Joan. “They put on a happy face and they seem fine and you may see small things but you want them to be fine.”
Alzheimer’s and dementia, which affects more than five million Americans today, can also be a sneaky disease. An older loved appears relatively healthy and fine physically but is suffering from dementia that can cause sudden mood shifts or other emotional problems, especially frightfulness and forgetfulness. It is only through the activities of daily living that one sees how critical proper care becomes and Joan had not seen this before.
Joan encountered what I call “Goldilocks Syndrome” trying out several facilities before finally finding the right environment for her mother’s health needs and happiness. After Gladyce suffered several falls breaking her foot, her rib, then hitting her head and needing staples did Joan realize a specialized care facility would be necessary. The social worker at the hospital where Gladyce was treated for her falls put Joan in touch with a senior care facility advisor. The advisor assigned to Joan assessed Gladyce’s needs and then took Joan and Gladyce on a tour of several facilities that she thought would work. They settled upon a small residential care facility with just six residents in a large home setting.
Using Her Journalistic Instincts – Tracking Down Leads
When Joan’s brother passed away, it was left to Joan to decide if her mother could continue living independently with some personal care assistance from an outside agency or a professional. In addition, Joan needed to go through all the paperwork for her mother that her brother had been handling. Joan, her brother and her mother had been a threesome as Joan grew up since her father was tragically killed in a plane crash when Joan was only 14.
Faced with a mass of paperwork and a lot of missing documentation, Joan got down to doing what she does best – investigating. As a journalist you have to be inquisitive and look for clues to the real story. In Joan’s case she had to search through mountains of paperwork and become an amateur genealogist to be able to help her mother. She could not access her mother’s bank account, she could not find a social security card or driver’s license, and she had nothing to go on except she knew her mother’s maiden name.
An elder law attorney that Joan had secured advised her to find her mother’s birth and marriage certificates. This would be verification for the Social Security office to issue her mother a duplicate card since Joan could not find the original.
In addition, Joan would have to have her mother authorize her as a co-signer on the bank account and grant her access to health insurance and other critical information that has privacy protection. Thank goodness in Joan’s case her mother was still lucid enough to authorize her daughter to help – in many caregiving situations the loved one can no longer provide that authorization and it becomes a costly and time-consuming burden for the caregiver to get this done.
“You think you know your parents but then something like this happens and you realize maybe you do not know as much as you should,” says Joan. This is especially true when it comes to verifying records and making decisions on their behalf.
In retrospect, Joan says, “I wish I had the family meeting before the crisis in care happened but I am typical. The crisis happened and all of a sudden you have to become an instant expert at so many issues around elder care.”
Joan’s advice to all caregivers, current and future, is to take a page from her long-running morning show career. “Have the conversation, start the dialogue, do the interview with your loved one,” she says. “And, most importantly, don’t stop communicating – talk to your loved one as often as possible, talk to their doctor, ask questions, talk to the facility administrators and health care professionals – stay on it . It is the most important tool you have – it keeps you connected to your loved one and to the essential care needs they have.”
Joan recently lost her mother, who was known as “Glitzy Glady” at the memory car residential facility she called home. Joan is following in her energetic mother’s footsteps. As the poster gal for 60 being the new 40, Joan says she is healthier today than she has ever been in her life and that her caregiving experience has given her new insights into the message of “prepare for the worst and hope for the best.” Her inspirational attitude is captured in a book she co-authored about caregiving stories, Chicken Soup for the Caregiver’s Soul.
On November 11 we celebrate our nation’s veterans. More than 10 million caregivers are providing care for a veteran. Read Sherri Snelling’s Examiner.com article about ways to volunteer to help veterans and their family caregivers.
Caregiver Monday is an initiative from the non-profit Healthy Mondays organization that promotes a weekly dose of caregiver self-care to stay strong — physically and emotionally — as a caregiver. Check out Caregiving Club’s Me Time Monday videos (in the right hand sidebar) which support the Caregiver Monday campaign.
To read more about Me Time Monday, click on these article links:
Caregiver RX for Stress: 3 Steps to Me Time Monday for the Huffington Post
Watch the Me Time Monday video tips on Caregiving Club’s YouTube channel
During 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
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 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.
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
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.
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:
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.
Guest on Tuesday, November 12
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.
Guest on Tuesday, November 26
Gary 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.
Guest on Tuesday, November 26
Ruth 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 .
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 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’s Lost Generation: The Nation’s Children for Huffington Post
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
The Sibling Caregiver for PBS Next Avenue
Caregivers of Veterans:
Caregivers caring for those with PTSD and TBI for Huffington Post
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
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
Caregiving Conversation Between Your Heart and Your Head for the Huffington Post
Dementia Caregiver Stress and Long-Distance Caregiving for PBS Next Avenue
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:
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
Boomer Parents Caring for a Veteran Son with TBI for PBS Next Avenue
Read our articles about diabetes prevention and awareness:
Following are all of Sherri’s articles for PBS Next Avenue:
Are You a Caregiver or Just a Good Child? (Sherri Snelling quoted in article)
Finding Affordable Home Care for Your Parents (Sherri Snelling quoted in article)
How Strong is Your Living Will? (Sherri Snelling quoted in article)
How to Care for Your Parent Without Losing Your Job (Sherri Snelling quoted in article)
A Victory for Alzheimer’s Patients and Caregivers (Sherri Snelling quoted in article)