November – National Alzheimer’s Awareness Month

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In November we highlight National Alzheimer’s Awareness Month to create education for a disease that is becoming our future health care epidemic. According to the Alzheimer’s Association, more than 5 million Americans have Alzheimer’s disease today – and that number will grow to 13.8 million by 2050.

This degenerative disease (and the most common dementia diagnosis) is the only cause of death in the Top 10 (ranking 6th) that has no cure, no prevention and cannot be slowed. One in three seniors will die with Alzheimer’s disease and more men and women will die from Alzheimer’s than breast and prostate cancer combined.

While we wait for a cure, more than 15 million are caregivers for those with dementia. Women are disproportionately impacted by Alzheimer’s – two-thirds of those with the disease are women and three in five caregivers are female family members.

And, as with many disorders and diseases affecting the brain (autism, Parkinson’s, PTSD), Alzheimer’s carries a challenging societal stigma. That is why we need to educate ourselves about this disease, its impact on all of us and how we can be part of the fight for a cure. Check out the Alzheimer’s Association and USAgainstAlzheimer’s Network for more information. You can also join the Brain Health Registry – whether you or a family member has been diagnosed with Alzheimer’s or NOT – more clinical trial research is needed to find a cure quickly.

Read our CEO Sherri Snelling’s articles and interviews with celebrities that have been impacted with this disease:

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B. Smith & Dan Gasby on Alzheimer’s (originally published on Forbes.com)

Brooke Shields – endless love in caring for her mom

Diane Keaton – Sandwich Generation caregiver

Glen Campbell’s Farewell Tour (originally published on PBS Next Avenue)

Jill Eikenberry & Michael Tucker – caregiving team for her mom with dementia

Joan Lunden – coast to coast caregiving

Jodie Foster – Golden Girl Shines a Spotlight on Her Sandwich Generation Role (blog)

Kimberly Williams Paisley Chronicles Her Mother’s Dementia (PBS Apr 2016)

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

Nancy Reagan’s Caregiving Legacy (originally published on Forbes.com)

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

Rizzoli & Isles Creator Campaigns to Solve Alzheimer’s (originally published on Huffington Post)

Seth Rogen Getting Millennials to Care About Alzheimer’s (originally published on PBS Next Avenue)

Still Alice May Be the Movie That Sparks the Alzheimer’s Movement (originally published on PBS Next Avenue)

Sylvia Mackey – Hall of Fame Caregiver Who Changed the NFL

Amour – A Caregiving Movie Review (originally published on Huffington Post)

And more from Sherri Snelling on Alzheimer’s disease:

Alzheimer’s App Uses Singing to Boost Mood (originally published on PBS Next Avenue)

Alzheimer’s Epidemic Hits Women Hardest (originally published on Forbes.com)

Caregiving Conversation Between Your Heart and Your Head (originally published on Huffington Post)

Dementia Caregiver Stress and Long-Distance Caregiving (originally published on PBS Next Avenue)

The Longest Day honors the long good-bye

Watch our videos on Alzheimer’s and with celebrities impacted by the disease:

 

 

Jodi Foster’s Sandwich Generation Moment

Three years ago, Hollywood actress/director, Jodie Foster received the Cecil B. DeMille Award for a Lifetime Achievement in Film at the Golden Globes ceremony. While Foster’s accomplishment in movies is formidable it was her heartfelt speech that night about her mother that riveted the audience and TV viewers.

For more than 7 minutes she commanded the stage and a worldwide audience in an emotional stream of consciousness as this most private of celebrities shared intimate thoughts about her mother, Evelyn “Brandy,” with dementia in the same way she has shared her art with us through her compelling film performances for four decades.

She spoke directly into the camera as if the crowded room of Hollywood luminaries and millions of viewers at home went out of focus and she was speaking to the single mom who held her 53-year-old daughter’s hand through show business since she was three years old.

“Mom I know you’re inside those blue eyes somewhere and that there are so many things you won’t understand tonight,” said a teary Foster. “But this is the only important one to take in:  I love you, I love you, I love you.  And I hope that if I say this three times, it will magically and perfectly enter into your soul, fill you with grace and the joy of knowing that you did good in this life.  You’re a great mom. Please take that with you when you’re finally OK to go.”

jodie-foster-and-her-mother-evelyn-gettyimagesThis revelation of her 87-year-old mother’s Alzheimer’s disease (although she never said “Alzheimer’s”) was not the first time Foster has talked about her mother’s illness but it was the most high profile and profoundly public acknowledgement of her Sandwich Generation caregiving role. Her young sons, Charles and Kit, were in the audience as their proud mom talked of her boys being the reason she is inspired while she also said her mother was the “greatest influence of my life.”

In a 2010 interview with the Daily Mail in the UK, she said about her mother’s illness, “She’s really a new person, not the mom I grew up with, and I have a real nostalgia for who she was. She spent years and years alone because she never remarried after my father left and she raised us by herself.  She used to say: ‘I’m an only child so I prefer to be alone,’ and she didn’t keep up with her friends.”

According to the Alzheimer’s Association, more than 5 million Americans and 36 million people worldwide are diagnosed with dementia and an additional 17 million Americans care for someone with dementia or Alzheimer’s disease (the most common type of dementia).  In fact, every 67 seconds someone new develops the disease and while early on-set Alzheimer’s can be diagnosed when someone is in their 40s or 50s, one out of every two people age 85 or older will develop dementia.

Jodie Foster joins the ranks of the 24 million Sandwich Generation caregivers – those caring for children still at home while simultaneously caring for an older parent – including high-profile caregivers such as Diane Keaton, Maria Shriver, Brooke Shields, Joan Lunden and Holly Robinson Peete.

While some caregivers of those with Alzheimer’s find it hard or almost impossible to care for their loved one at home because of violent outbursts, sundowning (extreme paranoia and frightfulness that can including screaming that begins at dusk) or wandering off, Foster has stated she will keep her mom in her home as long as possible.

When asked in an interview if she would consider seeking residential care for her mother, she said, “Oh God no way. I’m going to feel good — I’m going to feel that the end honored her and that she didn’t have to lose her dignity.

“Dementia is an interesting thing,” continued Foster. “It’s the hardest thing I’ve been through and yet also strangely sacred… I’m just here to care for her. I have no axe to grind. Mine will be the last face she sees.”

Jodie Foster has never wished to be a symbol for her choices in life: Child actor free of scandal (if you don’t count the pre-pubescent prostitute she played in Taxi Driver which had some people up in arms); college co-ed career disrupted by a would-be presidential assassin (that forced her even further into her privacy shell); actor turned director (whose latest offering is Money Monster starring George Clooney and Julia Roberts opening this month); but I would love it if the Sandwich Generation could count on Jodie to continue to raise awareness for a role many of us will play in life: caregiver.

©2016 Sherri Snelling

Nancy Reagan’s Caregiving Legacy

Nancy Reagan cropThe passing of former First Lady Nancy Reagan on Sunday had our CEO Sherri Snelling reflecting on her advocacy for family caregivers and especially for Alzheimer’s research. Read Sherri’s article that was published on PBS Next Avenue:

Nancy Reagan’s Caregiving Legacy

 

Music Can Soothe the Soul of Caregivers and Their Loved Ones

Where words fail, music speaks. – Hans Christian Andersen

the-little-mermaid bookAs the world watches the Grammy Awards tonight I was reminded of a story about one of my favorite authors whose first love was song.

As a little girl I loved the fairy tales from Hans Christian Andersen, The Little Mermaid, The Ugly Duckling, The Snow Queen. While seemingly written for children, the stories transcend age and even mature audiences revered the chronicles of characters that were resilient in the face of many challenges and obstacles.

What many may not know is that Anderson’s first love was music. He was an excellent soprano and as a young teen entered the Royal Danish Theater in his native Denmark. But as his voice changed, he had to change his dreams and began writing about those whose passion had to find another course. Not all of Andersen’s stories had the typical happily ever after endings but they spoke on a deeper level to readers who could survive even if the spark of a dream was extinguished. It has been observed by Andersen biographers that when Andersen had writer’s block, he would listen to music.

 

 

Music That Feeds the Soul

Although music has been with us since the dawn of time, in the last few decades studies have proven that music as a therapeutic tool can increase cognitive function in Alzheimer’s patients, help premature infants gain weight, encourage autistic children to communicate, lead stroke patients to regain speech and mobility, control pain for dental, surgical and orthopedic patients and manage anxiety and depression for psychiatric patients.

Dr. Oliver Sacks, the renowned neurologist and psychologist at Columbia University Medical Center best known for his 1973 book Awakenings, which became an Academy Award-nominated film starring Robin Williams and Robert De Niro, and who also wrote Musicophilia: Tales of Music and the Brain, testified at the Hearing before the Senate Special Committee on Aging entitled, “Forever Young: Music and Aging,” and issued this statement:

“The power of music is very remarkable… One sees Parkinsonian patients unable to walk, but able to dance perfectly well or patients almost unable to talk, who are able to sing perfectly well… I think that music therapy and music therapists are crucial and indispensable in institutions for elderly people and among neurologically disabled patients.”

The Magic Brain Workout Is Music

Since music is associated with one of the five senses – hearing – which is controlled by the brain it makes sense that we should exercise our brains with music listening to spur cognitive function in the same way we use physical therapy to exercise our limbs, muscles and joints to regain mobility and physical function.

When it comes to Alzheimer’s patients, studies have shown that music reduces agitation or improves behavioral issues such as violent outbursts.  In one pilot program, 45 patients with mid- to late-stage dementia had one hour of personalized music therapy, three times a week, for 10 months, and improved their scores on a cognitive-function test by 50 percent on average. One patient in the study recognized his wife for the first time in months.  Another music therapy study showed that stroke victims can learn to walk and use their hands again.

I recently wrote an article for PBS Next Avenue about a singing app, SingFit, that not only helps dementia patients but many seniors in assisted living environments as well as the family caregivers caring for a loved one with Alzheimer’s at home.

And, music therapy is not just used with older patients.  When it comes to those children diagnosed on the autism spectrum, music therapy allows these children to develop identification and appropriate expression of their emotions – music becomes the universal language.  Many people with diagnoses on the autism spectrum have innate musical talents so music therapy can give these kids a sense of accomplishment and success

When I spoke to Holly Robinson Peete, the successful actress, talk show host and singer, about her son R.J. who was diagnosed at age four with autism, she said he loves music and he has even recorded a song.  In fact, Holly finds music a great way for her entire family to connect with R.J. and to enter his world.

She told me, “I think music makes him more comfortable – it is a way for R.J. to communicate without being judged.”

A new YouTube song, Dignity by Anderson and Petty, also helps us understand the stigma of Alzheimer’s disease and how music can help erase those barriers. All proceeds from the song go to the Alzheimer’s Society, the leading UK dementia research and advocacy organization.

Music as therapy is not just for your loved one.  We know that caregivers encounter increased stress over caring for a loved one.  Since studies show that listening to music can lead to increased secretion levels of melatonin, a hormone associated with mood regulation, lower aggression, reduced depression and enhanced sleep.  Using music to cope with these common caregiver complaints can be a welcome relief to caregiver burn-out.

Groovin Puppy dreamstime_3978556 (2)How to Use Music in Your Caregiving Plan

Although the 2008 documentary Young @ Heart, showcased a chorus of 80-year-olds singing Beatles, Rolling Stones and Sonic Youth cover songs, most experts agree that with an older loved one it is best to choose music that reminds them of an earlier, happier time in their lives.

  1. Discover the “happy times tunes”: Talking to your loved one about happy times in their life and understanding the music associations with that time are essential.  Whether it is big band, gospel, rock ‘n’ roll, country, opera or blues, find out what made your loved one happiest.  Most older loved ones, especially Alzheimer’s patients who retain long-term memory as opposed to short-term memory, find tunes from their youth the most joyful but be careful.  Music can also evoke sad memories.  One Holocaust survivor in a pilot program reportedly became very upset upon hearing a Wagner opera which reminded him of that era of his life.
  2. Engage younger generations: You can help create emotional intimacy when spouses and families share creative music experiences.  Whether it is downloading songs from iTunes, creating a Pandora play list or using the latest technical creation for digital music files, engage your kids in interacting with their grandparent or sibling with special needs to choose their favorite music.
  3. Pick the right setting: It may not be as simple as turning on a radio.  The radio can be distracting with constant advertising that breaks the peace of music.  Instead, try internet radio like Pandora channels, or use an iPod or CD player instead.  And, be careful with headphones – some may take comfort in the privacy of headphones while others will become irritated or uncomfortable.   Also, consider live music situations carefully.  For author Gail Sheehy, being able to take her husband, who was suffering from cancer, to a last jazz night out on the town was a gift she will always treasure.  But, for special needs children and some older adults – the unsettling activity of a live concert or band can be frightening.
  4. Let your music play: As a caregiver music is your therapy as well. Whether it is creating your own playlist to lift your mood when you have a “down day” or just taking pleasure in watching your loved one become engaged, music can make your heart soar.  Celia Pomerantz, author of A Mother’s Daughter’s Journey, found that her mother, who grew up in Puerto Rico, loved a certain era of salsa music such as Tito Puente.  She created song lists of her mom’s favorite tunes while her mother was in the nursing home.  Celia became enchanted as her mother blossomed into the woman residents called “the dancing queen.”  The joy of music and watching her mother dance lifted Celia’s spirits about her mother’s Alzheimer’s diagnosis.
  5. Find a professional music therapist: The American Music Therapy Association (AMTA), a non-profit organization that represents over 5,000 music therapists, corporate members, and related associations worldwide offers information about music therapy studies and a listing of credentialed music therapists that offer services in institutional, residential and private home settings.

Music can both evoke and create memories that last forever.  I close with this heartwarming story from the AMTA web site:

When a couple danced together for the first time after five years of the husband’s deterioration from probable Alzheimer’s disease, the wife said: “Thank you for helping us dance. It’s the first time in three years that my husband held me in his arms.” Tearfully, she said that she had missed him just holding her and that music therapy had made that possible.

© 2016 Sherri Snelling All Rights Reserved

An NFL Wife Tackles Dementia

Sylvia Mackey bio photoAs 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 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.

john-mackey nfl baltimore colts from WebAs 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

JohnandSylviaMackey (2)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, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care

Cast of Caregivers Cover FINAL jpeg

Joan Lunden’s Coast to Coast Caregiving Coverage

NewsletterAdI’ve had the privilege of interviewing Joan Lunden several times over the last few years. She is an inspiration – as a woman warrior battling breast cancer, as a mom of seven (!!), as a successful businesswoman and as a caregiver to her mom whom she lost in  2013. I  first met Joan 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.  The following is an excerpt from my book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care, which includes Joan’s caregiving story.

Wake Up Call to Caregiving

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 10 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 8 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.

Joan and her mother, Gladys

Joan and her mother, Gladys

The Sunrise, Sunset of Alzheimer’s 

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 disease, which affects more than 5 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. The long-distance care Joan had ben providing her mom had given her blinders to her mom’s real needs.

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.

Press Hat dreamstime_m_11320792 (2)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 legal 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 advises.  “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 Lunden People Magazine Oct 2014Joan lost her mother in 2013 but is following in her energetic mother’s footsteps. Taking on a new role as a breast cancer survivor, Joan’s lifelong healthy eating habits now include a non-GMO diet. As the poster gal for 60 being the new 40, Joan says 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.

 

 

©2015 Sherri Snelling

Caregiving Tipping Points

We are a nation of caregivers – according to the National Alliance for Caregiving one in every three households includes a family member who is caring for a loved one who physically or mentally requires help with some or many of life’s activities. It may start by taking mom or dad to the doctor’s office or physical therapy or helping them pay bills or mow the lawn, but often escalates into more intense caregiving such as feeding, bathing and dressing a parent or loved one who has physical limitations.

Often when caregiving is at its most physically and emotionally intense levels, there comes a time in every caregiver’s journey when the ability to “keep calm and carry on” becomes an insurmountable challenge.

Following are the most common caregiver tipping points – they typically fall into three areas: physical challenges, safety challenges and behavioral challenges which all affect the caregiver’s own health and wellness.

Physical Challenges

1. Help walking and lifting

MS

When a parent, spouse or other loved one becomes physically unable to walk without help of a cane, walker and especially if they are in a wheelchair, lifting and transferring becomes a physical challenge for the caregiver. For instance, a wife weighing 120 pounds trying to lift the dead weight of a husband who weighs 200 pounds into and out of bed, wheelchair or a car can result in shoulder, neck or back injury for the caregiver and a possible harmful fall for the spouse.

AgingCare reports 52 percent of musculoskeletal caregiver injuries occur when lifting or transferring. Being trained on a proper lifting technique and avoiding twisting, stooping and bending positions are critical for the caregiver.  Think like a weightlifter – always bend the knees, keep the back straight, ensure you have a firm grip on your loved one and let the leg muscles do most of the work. Alternatively, engaging the help of a stronger family member, friend or home health aide often becomes essential for the health of both the care recipient and caregiver.

2. Incontinence

One of the toughest tasks for caregivers is cleaning and changing the diaper of a loved one who has the inability to control bladder and bowel movements. Often an overactive bladder creates a frequency to urinate and accidents happen because the person is not mobile due to hip or knee surgery or is physically unable to get quickly to the bathroom. It can also be tied to neurological disorders such as Parkinson’s or dementia or other health issues such as diabetes, Crohn’s disease, multiple sclerosis or prostate cancer.  Alzheimer’s patients sometimes forget to follow regular toileting schedules or don’t remember where the bathroom is located resulting in spontaneous accidents.  People who suffer from incontinence are often humiliated by the accidents and embarrassed by the adult diapers required to help with the problem.

“We know 23 million men and one out of every two women over the age of 50 suffer from some type of bladder leakage to more intense incontinence issues,” says Liz Metz, brand director for Depend North America, one of the leading makers of adult diapers. “The social stigma associated with incontinence is one of the issues our latest brand campaign is trying to overcome – this is just another area of our lives where we have to adapt to aging.”

The Depend advertising campaign features celebrities such as actors Harry Hamlin and Lisa Rinna on a red carpet, Cheryl Burke, a professional dancer on “Dancing with the Stars,” and NFL football players Clay Matthews of the Green Bay Packers and Demarcus Ware of the Dallas Cowboys trying on briefs which are stylish and comfortable yet control small bladder leakage to larger incontinence problems.

A resource for caregivers facing this challenge is The CareGiver Partnership, an online shopping and information site featuring an extensive offering of more than 400 products and discounts where caregivers can also request samples to test before they buy product in bulk.  The site also includes comprehensive information for caregivers about incontinence issues and free telephonic customer service support from actual family caregivers who understand the issue.

Safety Challenges

1. Falls

Senior on Stairs dreamstime_m_18442871 (2)

According to the CDC, every 28 minutes a senior dies from injuries from falling and 2 million older Americans are treated in ERs every year from falling at home. Preventing fall risk is crucial for both caregivers and their loved ones.

In your loved one’s home or living environment, clear pathways for easy access and mobility, remove rugs and other obstacles that may trip a loved one who cannot lift feet or is using a cane or walker, install sturdy horizontal and vertical grab bars in showers and baths. Consider moving a master bedroom from upper floors to the ground floor to avoid stairs. Also, have a loved one’s eyes checked on a regular basis, often vision problems can result in falls and understand certain medications may make a loved one dizzy or disoriented – always ask the doctor of the side effects of new medications.

Caregivers who do not live with their loved one or cannot be vigilant 24/7 should consider some of the latest technology to help prevent falls or alert caregivers in case of a fall.  Products such as 5Star Urgent Response device or smartphone service from Great Call which provides GPS-enabled direct 9-1-1 help, CareLine Home Safety Telephone System from VTech or Philips Lifeline products allow caregivers to have peace of mind their loved one will receive fast response in case of a fall or other safety problem.

 

 

 

 

 

2. Wandering

Walking in Snow dreamstime_m_15100146 (2)

Most typically associated with Alzheimer’s disease and dementia, a loved one who has a tendency to wander is a serious safety issue. Six out of 10 of those with Alzheimer’s have a tendency to wander which can become a risk for death when a loved one wanders in inclement weather and is not quickly found.

Dr. Sally Brooks, vice president of physician and medical development for Kindred Healthcare, who cares for elderly parents, had a scare with her father who suffers with dementia. After her father wandered from the family home a few times and was found by local police, it became essential to find a facility that could accommodate her mother’s chronic depression and limited mobility and help keep her father safe from wandering.  However, the assisted living facility Dr. Brooks found for her parents had a hiccup in safety when it comes to her father’s wandering tendency.

“One day my dad left the facility unsupervised,” remembers Dr. Brooks. “He had his hat and coat on and started a conversation with a doctor in the hallway who thought he was a visitor.  The doctor allowed my dad on the elevator as they chatted and my dad walked right out the front door of the facility.”

Fortunately, her dad was found but the potential for harm still existed.  “I realized that even though I had difficulty managing dad’s wandering issue on my own, I had to remain vigilant with the assisted living staff to ensure they monitored him properly to avoid any future incidents,” says Dr. Brooks. “Even in a secure setting like the assisted living facility, my role as caregiver remains being the person who ensures my parent’s safety through good communication and frequent check-ins with my parents and staff.”

Caregivers of loved ones who wander but want to keep them home and safe can also find help through technology. The Alzheimer’s Associations offers both Medic+Alert Safe Return and Comfort Zone GPS tracking for those with early on-set or advanced dementia.

 

 

Behavioral Challenges

1. Aggressive behavior

Wicked Witch Hand dreamstime_m_20831851 (2)

Whether it is the paranoia and outbursts associated with sundowning of a loved one with Alzheimer’s or a spouse or parent who has been hurtful or emotionally controlling in the past, managing the emotional strain of caregiving is hard but emotional or physical abuse can become a tipping point for most caregivers.

Many caregivers feel obligated to care for an abusive spouse or parent because they have spent a lifetime coping with the situation.  They feel guilt over their loved one now needing their help because of an illness or other health issue but this is an environment where a caregiver’s own health and wellness is at risk.  Often seen with those with certain mental health issues or with veterans who suffer from post-traumatic stress disorder (PTSD), several studies show 50 percent of PTSD veterans commit spousal or family abuse.

Finding support groups where caregivers can share openly with others who many experience similar issues is one of the best avenues for caregivers getting the help they need to make decisions about their loved one’s care.

“Caregivers have to get over the guilt of not wanting to care for someone who is hurting them emotionally or physically,” says Dr. Diane Denholm, author of The Caregiving Wife’s Handbook. “An abusive relationship will only get worse when caregiving is needed. Caregivers have to remember – safety is paramount – both the safety of their loved one and their own safety.”

2. Failure to communicate

It might be a stroke or Alzheimer’s or result of surgery from throat, lip or other cancer which makes communication difficult and becomes a possible tipping point for caregivers to continue to provide adequate care.

“For the 15 million Americans who care for a loved one with Alzheimer’s, we have to become detectives in looking for clues in behavioral changes and adapting our communication style,” says Ruth Drew, director of family and information services for the Alzheimer’s Association.

Drew explains those with Alzheimer’s often feel fearful which can lead to agitation, frustration, confusion and depression. If a loved one becomes combative or physically distressed, caregivers should check to see if there is a bed sore, wound or other health issue causing the problem.  Also, understanding distractions such as the new face of an in-home care worker or younger boisterous children can cause agitation.  She recommends caregivers seek expert advice, such as the support programs found through the Alzheimer’s Association which provide online and telephonic lifelines to caregivers who are struggling.

“If we could see the world through their eyes we would recognize there is a reason to their distress, but all caregivers can do is try to read the cues and go with the flow,” says Drew. “Caregivers also have to realize they cannot do this alone.  Everyone has a different threshold for what they can and cannot do so don’t judge yourself by others or have guilt over why you’re struggling more than someone else did.”

 

©2015 Sherri Snelling

A Football Wife Helps the NFL Tackle Dementia

Football 50 yard line dreamstime_m_15024968 (2)As the New England Patriots celebrate their glory as victors in the Super Bowl this Sunday, another NFL victory took place off the gridiron several years ago and was led by a warrior woman.

Her name is Sylvia Mackey, wife of NFL Hall of Fame and 1971 Super Bowl hero John Mackey of the Baltimore Colts. Their love story is about football, courage, overcoming all obstacles and fighting for support of those afflicted with neurological challenges. Following is an excerpt from my book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care, where I interviewed Sylvia about her story and how she changed the game for the NFL.

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, statjohn-mackey nfl baltimore colts from WebAs 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

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.

JohnandSylviaMackey (2)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

Sylvia Mackey bio photoSadly, 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.

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, available on Amazon, Barnes & Noble and other online and local booksellers. 

CastofCaregivers Cover FINAL

Still Alice May Be the Movie That Sparks the Alzheimer’s Movement

This article was originally published on PBS Next Avenue

Still Alice Julianne MooreWhile Julianne Moore can start clearing space on her mantel for that best actress golden Oscar statuette, it is the troupe of passionate players at the heart of this story – an author, writers, producers, directors, actors and advocates – who brought Still Alice to the big screen and who also deserve the accolades.

Julianne’s tour de force performance in the role of a lifetime as a woman with early on-set Alzheimer’s disease, was made possible because a group of people were committed to showing the world what Alzheimer’s feels like for the 5.4 million Americans diagnosed today.

The “behind-the-scenes” story is how Still Alice just may be the little movie that ignites a big movement on how we view people with cognitive impairment and neurodegenerative diseases and propels Alzheimer’s onto the same stage of awareness and support as AIDS, cancer and heart disease.

The back-story begins in 1998 as Lisa Genova, a Harvard-trained neuroscientist with a grandmother suffering from Alzheimer’s disease, discovers that almost all the literature about dementia only looks at Alzheimer’s from the outside in, the perspectives all those of clinicians, researchers and family caregivers instead of the actual people diagnosed with the disease.

“What really drove the inspiration for the book was asking myself ‘what does Alzheimer’s feel like’ and not being able to find the answer in any literature – scientific or otherwise,” Genova told me during our hour-long phone interview. “Somehow I felt I had to write this story and in doing so it would keep me connected to my grandma.”

It took a few years and rejection from all the publishers she approached for Genova to bring her novel approach of telling the “inside out” story of Alzheimer’s to the printed page. Not deterred by publishers’ claims that a novel about Alzheimer’s was too limited, fearful and depressing, Genova self-published Still Alice in 2007 finally letting readers into the mind, heart and daily experiences of 51-year-old Alice. While the novel is about walking in Alice’s shoes, Genova also realistically portrayed the family’s experience with an understanding that the Alzheimer’s diagnosis affects more than just the person with the disease.

Read other Alzheimer’s caregiving books recommended by Caregiving Club

From Book to Screen 

Flash forward to an Alzheimer’s Association advocacy event in Washington, D.C. where Hollywood insider and Alzheimer’s caregiver and advocate, Elizabeth Gelfand-Stearns, listens to Genova, whose book has caught fire within the Alzheimer’s community and has hit the New York Times best-seller list, read a moving passage from Still Alice.

It struck a chord with Gelfand-Stearns, who had a maternal grandmother and a mother with Alzheimer’s. Along with her father and family, Gelfand-Stearns had created The Judy Fund, to honor her mother who was diagnosed with the disease at age 62, considered early-onset. The combination of telling a story of Alzheimer’s for the first time from the perspective of the person diagnosed AND showcasing that Alzheimer’s is not always about being age 80 and laying helpless in a nursing home – it can strike in your 40s, 50s, 60s – was all Gelfand-Stearns needed to start looking for a way to bring the book to the screen.

The Judy Fund Event (L to R): Sherri Snelling, Caregiving Club; Dr. Maria Carillo, National Alzheimer's Association; Elizabeth Gelfand-Stearns, The Judy Fund; Dr. Jill Kalman, Mt. Sinai Medical Center New York

The Judy Fund Event (L to R): Sherri Snelling, Caregiving Club; Dr. Maria Carillo, National Alzheimer’s Association; Elizabeth Gelfand-Stearns, The Judy Fund; Dr. Jill Kalman, Mt. Sinai Medical Center New York

“I just knew so many people, especially women who are disproportionately affected by Alzheimer’s, would recognize themselves in Alice,” Gelfand-Stearns told me. “This story was the opposite of the typical response to Alzheimer’s – to push it away and not think about it because ‘I’ll worry about it when I’m 80.’ This was the OMG moment when I realized everyone can see themselves in Alice – an accomplished, successful professor, wife and mother in her 50s. If Alice can have it, so could I, or my sister, or my friend.”

Read Sherri Snelling’s PBS Next Avenue article on how Alzheimer’s Impacts Women the Most

Gelfand-Stearns says the reality is Alzheimer’s is the 6th leading cause of death in the U.S. and the only disease in the Top 10 which has no cure and no survivors. This is our society’s next big epidemic and it’s important to not delay what we know is coming – a rising tide of aging people who will have dementia yet no hope to slow the progression or cure the affects.

Together with her producing and advocacy partner, Maria Shriver (the poster woman for the toll on families dealing with Alzheimer’s, her father Sargent Shriver died from the disease) Gelfand-Stearns helped shepherd the book to its big screen debut collecting various co-producing partners. The wish became reality when Julianne Moore signed on to play the titular character, Alice, and convinced her fellow cast to sign up for well-below their star status asking prices, including Alec Baldwin as Alice’s husband and young sensation Kristen Stewart as the eventual caregiving daughter, Lydia.

Moore, whose acting skills are matched by her exhaustive character research, insisted on spending four months talking to early on-set Alzheimer’s patients, their family caregivers, researchers, doctors and long term care agencies in order to fully embrace and immerse herself in the Alzheimer’s experience and to present the story of how it feels to day-by-day lose your memory, your independence, your life.

“I need to see it for myself to authentically play it,” Moore told Gelfand-Stearns. Moore became especially close to one woman, Sandy, who was diagnosed at age 45, even younger than the fictional Alice. Moore related that Sandy would have days where she could remember and function almost normally, and then there would be days where things in her brain were lost. What moved Moore is while Alzheimer’s was erasing a patient’s memories and daily abilities, the personality and essence of who this person is remained. It is the realization that Alzheimer’s patients do not disappear, that Moore has said in numerous interviews, is what interested her in doing the movie.

Still Alice movie poster

Rounding out this passionate group are screenwriters and directing partners, Richard Glatzer and Wash Westmoreland. Right before filming began, Glatzer was diagnosed with ALS, different from Alzheimer’s but still a progressive neurodegenerative disease. His understanding of how your life is slowly slipping away from your control brought a nuanced touch to the movie and inspired the cast and crew that life and your life’s passion can continue. During production, unable to speak, Glatzer would direct the actors via an iPad.

All involved with the movie are hopeful this becomes the defining moment when society, our government agencies and legislators realize we can no longer dismiss or ignore the impact of dementia.

“It’s easy for the world to ignore the elderly,” Genova tells me. “People don’t typically rally around an 80-year-old with Alzheimer’s, it’s sad and heartbreaking but it does not create a movement. But it’s almost impossible to ignore someone in their 50s with this disease.”

Genova believes this is why the vast moviegoing public may make Still Alice a rallying cry and help to erase the stigma of this disease which has lived in the shadows for too long  (just think of what Philadelphia did to ignite support for those with AIDS and HIV).

Gelfand-Stearns said many years ago we never said the word “cancer,” it was called the “Big C” because people were afraid and it was a death sentence. Then in the ‘80s and ‘90s AIDS and HIV was stigmatized and seen as only affecting a certain part of the population until Hollywood got behind the movement and gained Washington, D.C.’s attention.

Today, with treatments such as mammograms and AZT and society’s support with walks and ribbons, and the federal funding needed – these diseases can claim survivors and the stigma is non-existent. Gelfand-Stearns is hoping Still Alice and the campaign she is launching with Maria Shriver and the Alzheimer’s Association, My Brain, will have the same results. The campaign strives to have people use their brains in combating this disease and to understand that an Alzheimer’s diagnosis, which on average is around age 72, means the person has actually been living with the beginnings stages of the disease for 15-20 years.

Alz Assoc My Brain Campaign Celeb Poster

“My wish is that Julianne wins the Oscar, making everyone want to see this film which will lead to showing people the humanity, love and dignity of Alzheimer’s patients,” an emotional Genova told me. “If my book and this movie can be a cause for the call to action, what could be better than that?”

©2015 Sherri Snelling

Caregiving at the Movies – Still Alice

Still Alice movie posterA must-see on your movie list should be Still Alice – Julianne Moore’s poignant Oscar-nominated role reminds all of us that Alzheimer’s disease can strike even in your 50s.  Read the blogs about this movie that will propel the movement to END ALZ.

Joan Lunden – Breast Cancer Warrior on Caregiving Legacies

This article originally appeared on Next Avenue

When she stepped out onto the stage at a recent AARP convention, Joan Lunden looked as sunny and radiant as she always has as a 17-year co-host on “Good Morning America” in the ‘80s and ‘90s and more recently as the healthy living guru and businesswoman who inspires everyone she touches.

She came to talk to the gathered baby boomer and beyond crowd about caregiving – a role she had played with her mother whom she lost in 2013. But with bright eyes and a perfectly coifed hairstyle, Lunden said she wanted first to address “the elephant in the room.” A month earlier, Lunden, age 64, had gone public with the news that she was one of the 232,670 new cases of breast cancer among women in the U.S.  She announced she had just finished 12 weeks of chemotherapy and would enter another round of the cancer-killing therapy in a couple of weeks. As she smiled at the supportive crowd, she seemed strong and vulnerable at the same time.

Lunden’s life had been a series of triumphs and challenges. As a young girl, she lost her father, who was a cancer surgeon, in a plane crash. As she began her career as a TV broadcast journalist, it was during this period she had become caregiver to her brother, who had health complications from type 2 diabetes, and her aging mother who was eventually diagnosed with dementia.  She says what she realizes now that she did not at the time, is that caring for her brother and mother simultaneously over 30 years ago is when her caregiving journey began.  After GMA, she became a health advocate, writing books, making speeches and continuing to bring her California-girl sunshine to the masses, all the while crisscrossing the country from her East Coast home to the brother and mother who needed her care on the West Coast. After divorcing her first husband, she found love again with current husband, Jeff Konigsberg, only to face infertility issues and opt for surrogacy to have her last four children (two sets of twins who joined Joan’s three older daughters from her first marriage).

NewsletterAdI met Joan in 2010 when she interviewed me as a caregiving expert on a special RLTV program called “Taking Care with Joan Lunden.”  Since then, I have interviewed her a few times over the years and am always amazed at her boundless energy, her “you can do it” attitude and her genuine interest in people and their lives. Although her life reads like a Lifetime movie, the up and down Lunden roller-coaster has never impacted her exuberance. Joan credits her parents for her optimism. She said, “My mom was the ultimate positive thinker and my dad was a doer.”

It is this positive outlook that brings Joan a lifeforce which I know will help her conquer breast cancer and is the same prescription that made her a model caregiver.  What she learned as a caregiver is now empowering her as a cancer warrior.

For instance, Joan told me she had guilt over not moving her mother closer to her while her mom lived her last years with dementia. Eventually, Joan realized that removing her mother from her comfort zone of the California sunshine and dear friends to colder climes on the East Coast, would not have solved the problem. Joan was traveling constantly during those last years and would not have had much more time to care for her mother even if she had lived down the street. The staff at the California dementia care home where she eventually moved her mom reminded Joan that the periods between visits were inconsequential to someone with dementia who has lost ability to understand space and time.

Joan also expressed guilt over being diagnosed with breast cancer. Advocating for healthy eating much of her adult life, she says she felt that somehow she must have done something wrong along the way. Joan realizes now she was paying lip service to reading food labels – ignoring the real information.  She said, “The American diet is the best fertilizer for growing cancer.” Today Joan eats clean and has eliminated wheat, dairy and sugar from her diet and advocates for avoiding GMO foods (genetically modified organisms).

Having the strength and energy to battle cancer is the same diet plan caregivers need to have the stamina to keep caring for a loved one. And letting go of guilt is the ingredient for a strong emotional core during caregiving challenges.

Joan also looks for the silver linings in life – a lesson all caregivers need to push through some difficult and overwhelming feelings. When it came to dementia and caring for her mom, Joan realized she had to let go of trying to bring her mother back into Joan’s world. Instead Joan had to step into her mom’s world. When she showed her mom photos of her grown daughters, her mother would express confusion or lack of interest in not knowing these people. But when Joan swapped those photos with some of her and her brother as children and included some of her parents as young newlyweds, her mother’s face would light up. Along the way, Joan learned new things about her parent’s early life that she felt she would have missed if her mother did not have the cognitive impairment that made them both refresh memories from long ago.

When it comes to cancer, Joan said her silver lining is in recognizing the irony of losing her adored father who just happened to be a cancer surgeon. His plane crashed returning from a conference where he was training other cancer doctors.  When Joan was first diagnosed, she pondered whether or not to go public with the news. As she told the AARP crowd, “I thought it was ridiculous I could stay private with this news – it would break somehow. But my second thought was I had always wanted to follow in my dad footsteps and become a surgeon but scalpels and blades where not my thing. However, my dad gave his life training others about cancer – now I can follow his footsteps and do the same thing.”

Joan Lunden People Magazine Oct 2014As I look at the beautiful, bold, bald cover photo of Joan on this week’s People magazine, it is clear she is our teacher, our healer, our cheerleader and our role model in caregiving and in caring for ourselves.

Sherri has interviewed Joan several times over the years and included Joan’s caregiving story in her book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care.

A Woman Tackles the NFL and Dementia

Football 50 yard line dreamstime_m_15024968 (2)As the Seattle Seahawks celebrate their glory as victors in Super Bowl XLVIII this Sunday, another NFL victory took place off the gridiron several years ago and was led by a warrior woman.

Her name is Sylvia Mackey, wife of NFL Hall of Fame and 1971 Super Bowl hero John Mackey of the Baltimore Colts. Their love story is about football, courage, overcoming all obstacles and fighting for support of those afflicted with neurological challenges. Following is an excerpt from my book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care, where I interviewed Sylvia about her story and how she changed the game for the NFL.

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.

john-mackey nfl baltimore colts from WebAs 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

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.

JohnandSylviaMackey (2)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

Sylvia Mackey bio photoSadly, 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.

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, available on Amazon, Barnes & Noble and other online and local booksellers. 

CastofCaregivers Cover FINAL

Give Thanks by Joining the Movement to Stop Alzheimer’s

Proud Supporter Badge (2)This Thanksgiving holiday, I am asking my friends and family to join me in helping to stop an epidemic we are all facing:  Alzheimer’s disease.

I was named one of the Top 10 Alzheimer’s online influencers by Sharecare and Dr. Oz and I am passionate about advocating and educating about Alzheimer’s disease. I recently attended an educational event sponsored by Banner Alzheimer’s Institute (BAI), a non-profit organization that has developed the Alzheimer’s Prevention Initiative (API) and Registry.  As a paid sponsor for this effort, I want to share some information about Alzheimer’s disease and how you can join the effort this November – which is National Family Caregiving Month and National Alzheimer’s Awareness Month – to make a difference.

Do You Know?

Today, more than 5 million Americans have been diagnosed with Alzheimer’s – a number that will triple by 2050.  In fact, every 68 seconds someone new is diagnosed with Alzheimer’s disease.  And this diagnosis is not just for the person affected.  It is a diagnosis for the entire family, especially the 15 million Americans – 1 in every 10 U.S. adults – who care for a loved one with Alzheimer’s or dementia.

The myth is that if you have not experienced Alzheimer’s in your family health history, you don’t need to worry about being affected.  Yet our own longevity is working against us. As we live longer – 1 in 50 baby boomer age women will live to age 100 – and experience medical breakthroughs and new technology, we can diagnose this disease earlier where steps can be taken by families to address the challenges Alzheimer’s creates.

According to Jessica Langbaum, PhD., principal scientist at BAI and associate director of API, “Family history can increase the risk of developing Alzheimer’s disease.  However, familial Alzheimer’s disease is rare – less than 1 percent of new diagnoses are caused by genetic mutation.  If you do not have a family history of this disease, it does not mean you won’t get Alzheimer’s.”

For families the diagnosis can be devastating – emotionally and financially. The cost of in-home care for someone with Alzheimer’s averages $76,000 a year and special memory care facilities – assisted living and other senior living homes where staff is specially trained on dementia issues – are growing in numbers but can typically cost more than $100,000 annually and many families experience wait lists for residents. We often believe long term care insurance benefits or Medicare will cover all these costs but that is not always the case and the families are left with financial challenges that can be overwhelming.

Another myth is that we don’t need to worry about developing Alzheimer’s until we are well into our golden years.  While the statistics show that one in every two adults over age 85 will develop dementia, five percent of those with Alzheimer’s were diagnosed as “early on-set” – people in their late 30s, 40s, 50s and 60s.

In fact, just this year, I have interviewed two people who were diagnosed at age 51 and 52 and I met a woman at a conference who was diagnosed at age 38.  The silver lining is that these individuals, along with their families, have time to plan ahead for the impact the disease will have on their lives – an advantage many facing the disease do not have.

Finger Purple String dreamstime_16285962 (2)According to the Alzheimer’s Association, about half of people with Alzheimer’s disease are undiagnosed.  And many Americans do not know the difference between normal memory loss that comes with aging or stress versus concerns over dementia.  The Alzheimer’s Association has developed the 10 Warning Signs of the disease and explains the difference. For instance, forgetting where you put your keys is normal memory loss; putting your keys in the freezer is not.  Not remembering the names of all 10 of your grandchildren is normal aging memory loss; not remembering names for common daily items such the word for “toothbrush” is not.

The Call To Action – Join the Registry to Stop the Epidemic

This November while we gather with family and friends for Thanksgiving dinners, stop and look around the table.  More than likely, someone at the table will develop dementia in their lifetime.

Alzheimer’s is the 6th leading cause of death and the only disease on the Top 10 list of killers – along with heart disease, cancer and others – which cannot be prevented, slowed or cured.

By joining the Alzheimer’s Prevention Registry (www.endALZnow.org), you become a key player in helping to find a cure for this disease.  When you register (which is no cost) you will receive:

  • Updates on research, clinical trials, news, brain health information
  • Become eligible for potential study participants for prevention research.  Many clinical trials are not just about people who are ill or diagnosed with the disease. Researchers need 10-20 times the participants to screen for participation and API’s research focuses on people without symptoms. Many research and studies are abandoned because they do not meet their recruitment goals.
  • Some of the research participants simply fill out online surveys which take a few minutes. Others can elect to join in-person studies. It is your choice – there is no obligation to participate in any of the studies.
  • The only information you provide is your zip code and answer whether you have a family history of Alzheimer’s disease.  All information is kept strictly private and confidential and not shared. By joining the registry, you simply say you want to receive information about new research and studies.  You will be asked if you want to join any future studies and can decide at that time if you are interested.

Join Me

Proud Supporter Badge (2)I joined the Alzheimer’s Prevention Registry to help stop this epidemic.  I am asking you to share the link and information with your family and friends – via Facebook, email or otherwise – and help us achieve the goal of registering 250,000 people.  BAI is a non-profit organization dedicated to research, treatment and the creation of new standards of care for patients and families. They also bring together international institutions on scientific collaborations. You can follow their efforts on Twitter @AlzRegistry using the hashtag #endAlznow.

Here is what a couple of other registrants have said about why you should join:

“I joined the Registry in honor of my husband, who was diagnosed with early-onset Alzheimer’s at age 50. I can’t bear the thought of one of my sons developing this disease also,” says Dawn Revere.

“Being a caregiver for my mom really taught me the true meaning of love. Taking care of her and being her advocate and daughter at the same time really showed me what love is all about. I joined the Registry to fight against a disease that robbed my mom of everything,” shares Cynthia Manly.

Have a wonderful and safe Thanksgiving.

About Sherri Snelling

Sherri Snelling is CEO of the Caregiving Club and author of of A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care, which includes several celebrity stories of caregivers of those with dementia as well as Alzheimer’s information and resources.  She was named #4 to the Top 10 list of Alzheimer’s influencers online by Sharecare and Dr. Oz and is a blogger and writer for the Alzheimer’s Association as well as Huffington Post, Forbes, PBS Next Avenue and USA Today.