Kimberly Williams Paisley – Long Distance Lullaby for a Mom with Dementia

We all know the talented actress, Kimberly Williams Paisley, mostly from her fresh-faced, “all-American girl” role in the Father of the Bride movies. We also know her as the lucky real-life bride to country crooner and music star, Brad Paisley.

But it wasn’t until 2016 when Kim wrote her poignant memoir about becoming a dementia caregiver for her mother that we added her to the growing list of Sandwich Generation caregivers.

 

Our CEO, Sherri Snelling, interviewed Kim about her book, Where the Light Gets In – Losing My Mother Only to Find Her Again, that describes her challenges with a mom diagnosed with primary progressive aphasia, a type of dementia. Kim tells Sherri about creating the care team around her mom with her father, sister and brother, her guilt trip and how she traveled that road that all caregivers know so well and how her loving husband used a combination of hugs and humor to keep his wife’s spirits lifted even on those darkest days.

Click here to read Sherri’s interview with Kim here for PBS Next Avenue

Dan Gasby & B Smith – The Hope to End Alzheimer’s

“I have a dream of a world without Alzheimer’s.”

–Dan Gasby

Dan Gasby and his celebrated wife B. Smith (known as Barbara to family and close friends) have always been partners – in love, in business, in life. As a former model turned beloved lifestyle icon with cookbooks, restaurants, a line of home goods at Bed, Bath & Beyond and as host of her own TV show, B. had built a wonderful life and achieved fame with Gasby’s management of her personal brand.

But after 22 years of marriage, Gasby writes in their book, Before I Forget, that he and B. started having struggles and he worried their marriage was in trouble.

It began as small arguments with B. becoming more distant and angry, a side he had never really seen in his wife before. When a reliable, punctual B. began showing up very late for important business meetings or missing them all together, Gasby knew something was wrong. But after an alarming 2012 Today TV segment where the ever- chatty and effervescent B. went silent and stared blankly at her co-hosts for what seemed an eternity, Gasby knew this was no mid-life crisis. A series of tests and visits with different specialists in Manhattan where they lived led the couple to hear a word they never thought would apply to either of them: Alzheimer’s.  B. was only 62 years old.

“B. has always been fearless, she has never been afraid of anything,” Dan Gasby told me during a break from their current book tour while they were in Birmingham, Alabama. “But both of us sat there in shock after the doctor told us B. had early on-set Alzheimer’s disease. Little did we know the journey we were about to take. But we both knew it was flight or fight and we are both fighters. I knew wherever we were going, we’d take the steps together just like we’d always done.”

Being Present and Patient

That was three years ago. Since then the couple have sold their Manhattan apartment and moved to their Sag Harbor, N.Y. coastal home. The soothing sea sounds and walks along the beach – together or alone but always with their cherished dog, Bishop – are a comfort to them both as they cope with this difficult diagnosis.

What has made their journey and their story unique is that B. is one of the rare Alzheimer’s sufferers who actually knows she has the disease. The Alzheimer’s Association reports only five percent – about 200,000 – of the more than 5 million living with Alzheimer’s disease receive a diagnosis in their 40s, 50s or early 60s. This awareness has made it easier and harder for the couple. They tackled the writing of the book (with help from Vanity Fair contributing editor, Michael Shnayerson) as they tackled everything – together. Both Gasby and Smith wrote chapters about how they were feeling through the years since B.’s diagnosis.

Dan and B. in the early days of their marriage

Gasby’s passages are filled at times with hilarious and at times heavy-hearted emotions. Beyond B.’s forgetfulness and some situations he calls the “WTF” moments help give a humorous theme to Gasby’s chapters. One example has Gasby learning to manage his ongoing frustration with not being able to convince his wife to let him hire someone to help B. organize her once pristine but now chaotic closet (he would not dare attempt the job). Then there are the more melancholy chapters about losing his lover, the woman he calls “sweetie” whose flirtatious, affectionate nature before and after making love is now dimmed. Through it all Gasby is learning how to be “present” and patient.

 

“I have learned the greatest language of all: patience,” he explained to me. “I came to a realization that Alzheimer’s had not just changed B., it changed me too. I also realized my frustrations weren’t really with B. they were with this disease and that helped me let go when I found myself getting annoyed at her.”

While Gasby’s writing is educational, especially about his quest to understand the science and research around Alzheimer’s, B.’s chapters are even more poignant since she knows one day she won’t remember any of it. Perhaps the most compelling of her writings is when she is mad about not being able to drive or when she is sad thinking she will visit her parents in Pennsylvania and then slowly remembers they passed away several years ago.

Watch Dan and B.’s story since her Alzheimer’s diagnosis:

Let the Mess Become Your Message

Gasby’s advocacy and urgency in seeking treatments and a possible cure to a disease that currently has no method to prevent, delay or stop it has led he and B. to support the Brain Health Registry. Last year, B. filmed a PSA for this online effort to encourage participation, especially among minorities, for clinical trials.

Watch the B. Smith PSA for the Brain Health Registry:

“While African Americans represent about 14 percent of the population, they bear over 30 percent of the costs of Alzheimer’s disease,” said Stephanie Monroe, executive director of AfricanAmericansAgainstAlzheimer’s. Launched in 2013, the organization is dedicated to labor intensive in-person community engagement to educate African Americans about the disease and to encourage more participation in clinical trials so essential to finding a cure.

In a report published and presented to the Congressional Black Caucus, it states that African Americans are over-represented when it comes Alzheimer’s but under-represented when it comes to research.

“The stigma in certain cultures and communities – especially among African Americans and Latinos – prevents many from ever receiving a diagnosis,” continued Monroe. “While early diagnosis can lead to treatments and drugs which are helping to slow the progression of Alzheimer’s, a later diagnosis offers fewer interventions. And with less participation in clinical trials, the hope of finding a cure is much more challenging.”

Jill Lesser, president of the WomenAgainstAlzheimer’s network that includes AfricanAmericansAgainstAlzheimer’s, said the laser focus of the organization is to find a cure for this disease by 2020.

“Most of those who are symptomatic of Alzheimer’s are probably already 10 to 15 years into the disease,” explained Lesser. “One of our research projects called Galaxy is designed for younger participants who don’t have any symptoms.  We’re taking a very disruptive approach to ending Alzheimer’s.”

Dreaming, Gardening, Creating a Vision

Gasby says he and B. decided to launch their book on Martin Luther King, Jr. Day because, “He was a hero of mine and he had a dream which we are still fulfilling,” said Gasby.

When I commented that he and B. are great examples of King’s legacy of pursuing a dream, he said, “I like to think of it more as a vision and a hope for future generations. Some day in the not too distant future, I would love to know little children are learning about Alzheimer’s disease – something they know nothing about because it doesn’t exist.”

He believes that in the same way we think today about smallpox or polio – diseases that devastated populations in the past but for which we found a cure – we have the ability to end Alzheimer’s. “But you cannot pray or talk this disease away,” said Gasby. “We must act – it’s like voting or participating in civil rights – you need to get out there and do something.”

B. is now in stage 5 of the 7 stages of the disease. Gasby told me it helps him to share his emotions – the good, bad and ugly – on Facebook. He said it’s like taking the top off a steaming, screaming kettle – once the pressure is released you feel better. The feedback he gets on social media is instant and encourages him that he and B. are making a difference.

“Right now I’m in the bargaining stage, I’ve done denial and anger and now I’m buying time in hopes that a cure will arrive,” shared Gasby referring to the five stages of grief identified by author and psychiatrist, Elisabeth Kübler-Ross.

He admits caregiving is the hardest role he has ever had to play. While he and B. have a close circle of family and friends, they have watched some “friends” slowly disappear because of their situation. He says that is okay with him.

“I look at it like having a garden where you need to pull some weeds out, fertilize the ground and the remaining plants grow even more strong and beautiful,” explained Gasby.

“Caregiving is a club I thought I would never join, I didn’t even really know it existed,” continued Gasby. “But caring for B. has made me a more complete person. You don’t really know who you are until you’ve faced real adversity and this is the hardest thing I’ve done but my ‘sweetie’ is worth it.”

This article was originally published on PBS Next Avenue

©2017 Sherri Snelling

April 10 – National Sibling Day

 

 

April 10 is National Sibling Day. When it comes to caring for Mom and Dad, siblings can either form a strong care team or can be the cause of conflict. Understanding each sibling’s role and having the family caregiving conversation earlier rather than later can help make the caregiver journey a smooth ride for all family members.

There is another side to siblings and caregiving: a study found that 18 percent of those caring for someone over age 75 were siblings caring for siblings. And, caring for young adults with disabilities or chronic conditions tend to be managed by siblings and are longer-term and more intensive.

Read our articles from CEO Sherri Snelling about siblings and caregiving:

The Sibling Caregiveroriginally published on PBS Next Avenue

Also, read Kimberly Williams-Paisley’s new book, Where the Light Gets In – Losing My Mother Only to Find Her Again, about how she, her father and her siblings formed a cohesive care team for her mom with dementia

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.

Celebrity Spotlight – Celebrating Sandwich Generation Caregivers

 

More than 24 million Americans are caught in the middle called the “Sandwich Generation” who are caring for two generations simultaneously: children and older parents.

July marks National Sandwich Generation Month where our CEO Sherri Snelling has interviewed famous Sandwich Generation caregivers  who share their caregiving journeys and their tips on how to balance family, career and caregiving without losing focus on caring for yourself.

Read Sherri’s interviews with these Sandwich Generation caregivers:

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

Kimberly Williams-Paisley – Finding Her Mother Again

Brooke Shields – Endless Love in Caring for Her Mom

Joan Lunden – Coast to Coast Caregiving