AARP Webinar – Caregiving Conversation with Dan Gasby and B. Smith

AARP hosts a caregiving conversation with Dan Gasby, husband and business partner to lifestyle icon, B. Smith, who was diagnosed with early on-set Alzheimer’s a few years ago.

Join Caregiving Club CEO, Sherri Snelling, as she talks with Dan and B. about their message of hope and advocacy in the face of this devastating illness:

When: Monday, February 27, 2017 from 7:00 – 8:00 pm EST (4:00 – 5:00 pm PST)

Where: https://aarptek.aarp.org/tek-online-webinars/2017/2/27/making-your-mess-your-message-featuring-dan-gasby-with-sherri-snelling

 (registration is FREE)

Dan shares his challenges in finding patience and being present, in understanding the disease that has changed his “sweetie,” and how we all have a role in fighting this disease that today affects 20 million Americans – 5 million living with the disease and 15 million who are caring for them.

 

To view other AARP Webinars with Sherri Snelling, check out the archived listings on AARPTek:

November, 2016 – “A Caregiving Conversation with Holly Robinson Peete”

January, 2017 – “Demystifying Medical Apps and Wearable Health Devices – an interview with Dr. Leslie Saxon of the USC Center for Body Computing at Keck Medicine of USC.

Caregiving At the Movies – Our Version of the Oscars

The Oscars are octogenarians as this year (February 26) marks the 89th year that the annual Academy Awards will be held.  Caregiving Club’s CEO Sherri Snelling has long been a fan of movies (it’s one of her personal “Me Time Monday” activities) and has interviewed numerous celebrities of film, TV and music about their caregiving journeys.

In her book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care, she uses movie and TV metaphors to explain the different types of caregiving roles we play and the different responsibilities caregivers take on.

This month, we celebrate the movies that have shed light on caregiving in all its forms.

 

 

Read our articles in our special section – Caregiving and the Movies:

Caregiving Goes to the Oscars (reviews of 2013’s Amour, Silver Linings Playbook and Quartet – originally published on Huffington Post)

And the Oscar Goes to…Caregivers (reviews of 2014’s August Osage County, Nebraska, The Dallas Buyer’s Club – originally published on PBS Next Avenue)

Still Alice – the Movie That May Spark a Movement (originally published on PBS Next Avenue)

Caregiving Club also gave out our version of the Oscars in 2012 – The CAREY Awards. It was a look at reel life and real life caregivers.

1st Annual CAREY Awards (2012)

 

 

 

 

 

And, Caregiving Club has interviewed celebrities at several red carpet events and produced three Me Time Monday videos about caregiving in the spotlight:

 

Caregivers of the East Wing – Celebrating First Ladies

On President’s Day, we honor two great men who have led this country through its creation and one of its most trying times – namely George Washington and Abraham Lincoln respectively.  And while feature films and mini-series have celebrated our former presidents, it is the First Ladies who have served as caregivers that I honor today.

Hillary Clinton, Nancy Reagan, Barbara and Laura Bush and the caregiving pioneer, Rosalynn Carter, are passionate advocates for our nation’s 65 million caregivers because they have taken the caregiving journey themselves. And, Michelle Obama showed the nation how to manage a multi-generational household when her mother moved into the White House to help the former First Lady with rearing daughters, Malia and Sasha.

When current First Lady Melania Trump takes up residence in the White House next month, she may not be caring for her older parents or other relatives but she has pledged to support women’s issues and there is no bigger issue for women today than the juggling act of caring for an older parent. And, First Daughter, Ivanka Trump Kushner, has been instrumental in pushing her father, President Donald Trump, into adopting an expanded family leave act for working caregivers of children and older parents.

Rosalynn Carter – The First Caregiver Pioneer

 

Long recognized as one of the pioneers of the caregiving movement, Rosalynn Carter is known for her famous description of the life event of caregiving in America:

 

 

You have been a caregiver

You are a caregiver

You will be a caregiver

Or someone will be caring for you

In her book, Helping Yourself Help Others – A Book for Caregivers, former First Lady Rosalynn Carter writes, “We can learn to approach caregiving as a blessing as well as a challenging task.”

She knows of what she speaks firsthand:  Rosalynn was only 12 years old when her father was diagnosed with terminal leukemia.  As the eldest daughter, she helped care for her ailing father and supported her mother by also caring for her younger siblings.  She took up caregiving again for several relatives with cancer after she left the White House and most recently was caregiver for her mother who died in 2000 at age 94.

Rosalynn’s gift to caregivers comes from a lifetime of understanding the challenges – emotional, physical and financial – that accompany caring for a loved one.  She was the first to hold a caregiver conference that identified “burn-out” that is so often a side effect of caregiving. She is also a long-time devoted and determined advocate for those Americans with mental health issues. It was the recognition of a national center to focus on the future caregiving issues facing America that led Rosalynn Carter to create the Rosalynn Carter Institute (RCI) for Caregiving at Georgia Southwestern State University in Americus, Georgia.

The mission of the RCI is to establish local, state and national partnerships with organizations focused on quality, long-term home and community based services to help caregivers.  The RCI activities include a variety of advocacy, academic, and awards and scholarship programs.  While many of the caregiver programs are Georgia-based, these programs are examples that help serve as models for nationwide caregiver support, education and training.

Nancy Reagan – The Legacy of Alzheimer’s and the Long Good-bye

When Nancy Reagan passed away last year, she left a legacy of advocacy for the disease that took her beloved “Ronnie”: Alzheimer’s. Nancy and Ronald Reagan’s touching affection for each other was evident in the letter former President Reagan wrote to tell the world he was suffering from this neurodegenerative disease that afflicts 5 million Americans today.  In the letter, President Reagan not only helped shine his celebrity spotlight on a disease many Americans did not understand, but he also highlighted the concern he had for Nancy who would be caring for him.  He understood the difficult emotional toll it would take on his wife and as the disease progressed, and the last 10 years of his life he did not even recognize her.

Today more than 15 million Americans are doing what Nancy did – caring for loved ones with Alzheimer’s – and suffering the emotional toll of caregiving for a loved one with dementia known as the long good-bye. While Nancy had the resources to care for her husband in ways most Americans do not, the emotional toll it took on her cannot be ignored.

What was perhaps most heartwarming was that the strained relationship Nancy had with her stepchildren and with her own son and daughter, actually improved over the course of President Reagan’s disease diagnosis and decline.  Family dynamics are sometimes difficult to navigate during caregiving and can lead to added stress and strife.  But, in this instance, it brought a family closer together which is one of the gifts that can come from caregiving.

After President Reagan’s passing in 2004, Nancy became one of the most passionate advocates for Alzheimer’s disease awareness and education and especially lending her voice and support for the research around embryonic stem cells that can hopefully lead to a cure.

Barbara Bush – Caregiver for a Chronically Ill Child and an Aging Husband

At this year’s Super Bowl, one of the most poignant images was Barbara Bush pushing her husband, wheelchair-bound President George Herbert Walker Bush (known as “41”) onto the field for the coin toss.

At age 91 for Barbara and 92 for George (who is the oldest living former President), it was only days earlier that both had been hospitalized (he with pneumonia and she with bronchitis). But football in Texas is serious business and it would take more than illness and age to keep the Bushes from participating in an American tradition. And, while both have had illnesses over the years, it is Barbara who has stepped up to care for her husband over the last several years even though he was determined to be a vital senior, skydiving on his 80th, 85th and 90th birthdays.

However, in 2012, Barbara Bush was called into service as caregiver George when he was hospitalized with bronchitis and his fever had spiked. As a spousal caregiver, Barbara joins more than 3 million other spouses who are caring for their husband or wife, and the one in three caregivers who are over age 65 when the become a caregiver. And the stress of having a spouse in declining health can accelerate the stress caregivers feel.

We often witness the stress of the presidency – look at all presidents during the campaign and then after they leave office where their white or gray hair betrays the emotional burdens they have lived through. It is fact that the stress of being president prematurely age the men who have held office. But it was Barbara who suffered incredible stress and depression and subsequent “white” hair after caring for her ill child and then experiencing the premature death of her four-year-old daughter Robin to leukemia in 1953 when Barbara was only 28 years old.

Hillary Clinton – Caregiving Daughter and Champion

In 2011, Hillary Clinton lost her 92-year-old mother, Dorothy Rodham.  While the details of her mother’s passing and possible illness were kept private from the invasive world of 24/7 news media, Clinton has been a long-time advocate of the nation’s caregivers when she was a senator from New York.  She supported several pieces of proposed legislation that offered more services to support those family mebers who are providing 80 percent of the long-term care to keep a loved one living at home as long as possible.

In an interview from Clinton’s campaign days for the Democratic presidential nomination, she credited her mother with giving her the tools — and toughness — to enter politics.  In the end, her mother had also given her daughter the tools to be a compassionate caregiver.

Laura Bush – Sandwich Generation Caregiver

Laura Bush, an only child who grew up in the oil town of Midland, Texas, played caregiver to both her mother and her father.  While campaigning with her husband George “W” Bush who was running for governor of Texas, her father was diagnosed with Alzheimer’s disease.  While Laura, who was raising twin daughters, Jenna and Barbara, played back-up to her mother who was primary caregiver, she poignantly wrote in The Shriver Report:  A Woman’s Nation Takes on Alzheimer’s about the impact to families when Alzheimer’s disease happens.

“What my mother noticed first was that my father could no longer fill out bank deposit slips. He would stare at the lines on the forms, a look of confusion washing over his face. So Mother began to make the deposits for him. We never got a diagnosis of Alzheimer’s or a specific form of cognitive failing. But we saw his mind erode. Once, he asked our daughter Barbara to get him some ‘B & Bs.’ He meant M&Ms, but he kept saying ‘B & Bs.’ In her 10-year-old way, she understood him and came out of the grocery store with the brown bag of the bright candy just the same.”

Laura stepped in again to care for her mother, Jenna Welch, who was diagnosed with and survived breast cancer when she was 78.  Laura’s support of Susan G. Komen for the Cause and her activism on behalf of women’s risk of heart disease has led her to play a leading role in women’s and caregiver health issues. She was an ambassador for The Heart Truth campaign created by the National Heart, Lung and Blood Institute and dedicated the inaugural display of the First Ladies Red Dress Collection at the John F. Kennedy for the Performing Arts in 2005.

First Lady, First Daughter – Sandwich Generation Champion and Made the White House a Multigenerational Household

Former First Lady Michelle Obama joined the ranks of caregiver growing up as the daughter of a father with multiple sclerosis.  Her experience in helping to care for a father with an autoimmune disease currently affecting more than 400,000 people in the U.S. – with 200 more people diagnosed every week – gave her early insights to the impact of caregiving on families.  Michelle has been a true champion of the Sandwich Generation – those caregivers squeezed between caring for two generations – children and older parents.

Michelle also turned the White House into a multigenerational household when her husband held office. She invited her mother, Marian Shields Robinson, to come live in the White House to help care for her daughters, Malia and Sasha, who were only 10 and seven respectively. Dubbed the “First Granny,” Robinson was the first live-in grandmother in the White House since Elivera M. Doud, the mother of Mamie Eisenhower, during the Eisenhower administration in the 1950s. Recently, Pew Research reported that one in five Americans – approximately 60 million – live in multigenerational households.

While women may be seen as “the power behind the throne,” these First Ladies are proof that women also put the heart into caregiving.

This is adapted from Sherri Snelling’s upcoming book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care.

 

©2017 Sherri Snelling

Do You Know Your Numbers? It Could Save Your Life

 

Every October we are immersed in a sea of pink – the color for breast cancer awareness –  yet the No. 1 killer of women in America remains heart disease.  In fact, twice as many women die from stroke or cardiovascular disease than all cancers combined, including breast cancer.  More than 1 in 3 women will die from heart disease this year – one every minute.

Go Red

This February, the American Heart Association celebrates its 14th anniversary of its Go Red Campaign in an effort to paint the town red and get women to stop and understand the truth of their heart disease risks.  Over the last 11 years the campaign’s success has paid off with amazing results:

 

  • More than 627,000 women’s lives have been saved through awareness and education – that is 330 lives per day
  • Almost two million women have completed the Go Red Check-up – a 10-fold increase since 2003
  • Women have changed their heart risky behaviors – smoking has decreased 15 percent, 1 in 2 women have increased their exercise and cholesterol levels are 6-18 percent lower for those with readings over 200

“Women who Go Red have the awareness and are more empowered to make lifestyle changes,” says Dr. Suzanne Steinbaum, Go Red cardiologist and author of Dr. Suzanne Steinbaum’s Heart Book:  Every Women’s Guide to a Heart Healthy Life.  “Nine out of 10 of the women who visit our web site have made at least one healthy behavior change. But we still need to spread the word because there is a disconnect between women knowing about heart disease as the No. 1 killer and understanding their personal risk.”

 You Know Your Body Better Than Any Doctor

One woman who became the most unlikely poster woman for heart disease is Dianne Kane-McGunigle of Quincy, Mass.  The 53-year-old platinum blonde stunner was always fit and healthy working as a personal trainer and fitness instructor and running marathons on weekends.  The mother of two had grown girls had always watched her numbers – things like weight, cholesterol and blood pressure and according to her doctor was as healthy as a woman at least a decade younger.

But one day last year, Dianne clutched her chest, hit the floor and found her police officer husband rushing her to emergency.  All she could think about was, “Please don’t let this be bad – I haven’t had grandchildren yet.”

“I come from tough Irish stock and in retrospect I was overlooking some small warning signs because in my family you just tough it out,” says Dianne.

A couple of days before this emergency, Dianne had experienced some acid reflux and her forearms were achy and kind of numb.  She chocked it up to pushing herself too hard in recent workouts.  But the night before her attack she had tiny spams in her heart and she started sweating and feeling nauseous.  Next thing she knew she was on the floor and then in the hospital.

“Heart disease in women often presents differently than what we see in men,” says Dr. Steinbaum.  “It can be a sudden chest pain, such as what Dianne experienced, but it can also be more subtle – shortness of breath, jaw pain, back pain, flu-like symptoms, difficulty sleeping and the symptoms Dianne experienced such as nausea and vomiting.”

In addition, women who are caregivers – caring for an older parent or spouse with a devastating disease – are at greater risk for heart disease because of the prolonged emotional stress of caregiving, neglect of their own health and wellness needs and a tendency to adopt or rekindle bad habits such as smoking.

The ER doctors ran tests and told Dianne she was fine and was probably just experiencing a panic attack or had over-exerted herself at the gym.  But Dianne knew better.

“If I have any message for women out there – it is to be an aggressive advocate in your health and the health of your loved ones,” she says.  “I knew something was really wrong and I wasn’t going to be ushered out of the hospital as someone who just had a simple panic attack.”

She begged a kind nurse to run more tests.  “I’m dying,” Dianne told the nurse.  “You have to help me.”

Additional tests found that indeed Dianne had suffered a heart attack known as a widow maker.  This is a type of heart attack where it is a stenotic left main coronary artery –  a blood clot prevents blood from pumping through the left descending artery often resulting in a massive, sudden, fatal heart attack.  This is the same kind of heart attack that Rose O’Donnell survived a few years ago.

“My doctors and I truly believe if I had not been as fit as I was, I would surely be dead,” says Dianne.

All In the Family

 

The American Heart Association advises women to know five important things when it comes to heart disease:

  • Don’t smoke. Period.
  • Know your numbers – blood pressure, cholesterol, blood sugar (for diabetes risk which is tied to heart disease).
  • Maintain a healthy weight and BMI (body mass index) by eating nutritiously.
  • Have a consistent exercise schedule (it keeps your body fit and reduces stress).
  • Know your family history.

Dianne (left) with twin sister Denise

It is #5 that hit Dianne like a Mack truck.  She had all the other items checked but she had no idea that in her family, the widow maker type of heart attack is on both sides of her family tree.

“That was my wake-up call,” says Dianne, who has an identical twin, Denise.  Now this Go Red spokeswoman talks to other women about heart health and understanding each of the five things that could contribute to a life-altering event.

 

“Go Red encourages women to wear your red and tell five friends about the heart disease risk factors,” says Dianne.  “I have five sisters, including my twin sister, and we’ve all talked about our family risk.  I Go Red for them.”

 

©2017 Sherri Snelling

 

 

 

 

The Dream Team – How Caregivers Can Help Loved Ones Achieve Their End-of-Life Wishes

Fifty-four years ago, Martin Luther King Jr. gave his famous “I Have a Dream” speech on the steps of the Lincoln Memorial in Washington, D.C.  As we honor Dr. King’s birthday today with the “MLK Day of Service” family caregivers can perform two acts of service for their loved ones:

  • Ensure your loved one’s end-of-life wishes are in order (including Living Wills, Health Care Directives, Durable Power of Attorney, DNR, etc.).
  • Help your loved one fulfill something on their bucket list.

Following are two great ways for caregivers and their loved ones to achieve both of these dreams.

The Five Wishes

When it comes to end-of-life wishes – especially the legally binding paperwork so essential to ensure families are not pulled apart when they need to come together – it is hard to start the conversation. There is a tool available that is not only affordable, valuable and legal but helpful in beginning the dialogue about end-of-life. It is called The Five Wishes.

In 1997, Jim Towey, who had served as MotherTeresa of Calcutta’s friend, volunteer AIDS worker and legal counselor, created a nonprofit organization, Aging with Dignity. At the core of the organization was a document Towey created that was in his words a “living will with a heart and a soul.” Essentially, the document asks five questions that cover medical, personal, emotional and spiritual needs to help you

communicate how you want to be treated if you are too ill to speak for yourself:

  1. Which person you want to make health care decisions for you when you can’t make them.
  2. The kind of medical treatment you want or don’t want.
  3. How comfortable you want to be.
  4. How you want people to treat you.
  5. What you want your loved ones to know.

Watch the Me Time Monday video on “How to Have the C-A-R-E Conversation”

To date, the $5 document (either downloadable to your computer or mailed to you) has been filled out by 18 million people worldwide and has been translated into 26 languages and Braille. It is used in all 50 states and meets the legal requirements for an Advance Directive in 42 states (in the remaining eight states you can attach The Five Wishes to the forms that state requires).

Because The Five Wishes has interesting origins with the principles of Mother Teresa infusing its purpose, this can be the conversation starter with your family.  While the emphasis is on aging baby boomers to ensure these wishes are in place, having your wishes written, legally binding and communicated to family is smart for everyone.

It is the legacy of the Terri Schiavo case that shows us the agony and antagonism that can happen to tear families apart when someone’s end-of-life care is unknown. Schiavo was only 27 when she was put on a ventilator and feeding tube after cardiac arrest left her brain dead.  She lay in a vegetative state for 14 more years while her husband battled her parents over whether or not to keep her alive on machines.  If she had a Living Will or a Five Wishes document, there never would have been a battle.

Click here: Read the article on the late Brittany Maynard and the “Death With Dignity” Movement

The reality is if you do not have the conversation, family members can be confused and conflicted which can lead to emotional exchanges you do not want.  Dying is not a choice but how the end will be is.  We owe it to our families to share those wishes.  Your legal wishes may be written down but now is the time to start talking.

The Dream Foundation

When it comes to dreams, we all have our bucket list.  However, if you are battling a terminal illness, that bucket list seems even more precious but perhaps more elusive. Pain, immobility and money issues can dash these dreams and many give up their joy so they can focus their efforts on surviving.  But finding those moments of peace, reconciliation, validation and pleasure are part of life – no matter whether we are at the beginning, middle or end of our days.  One organization understands how important this is and grants real-life bucket list wishes to help caregivers help their loved ones achieve these end-of-life dreams.  Appropriately, it is called The Dream Foundation.

Seventeen years ago, Thomas Rollerson wanted to give his dying partner one last dream:  to go to the movies and see Mrs. Doubtfire starring his favorite actor, Robin Williams.  Seemingly a simple request, they set out for the move theater with water bottles to keep his loved one hydrated, a critical tool in abating the pain of his illness.  The theater asked the gentlemen to leave because you could not bring your own water into the theater. Rollerson, dedicated to helping his loved one see a last movie, called organizations dedicated to childhood dreams for terminal patients such as Make-A-Wish and the Starlight Foundation. All these organizations limited their help to children only and Rollerson was amazed to find no group granted adult wishes.

Undaunted, he contacted the movie studio, Twentieth Century Fox, and was astounded yet grateful when they provided a copy of the film (since the movie was still in theaters it was not yet in video stores).  This experience galvanized Rollerson to help other caregivers fulfill the dreams of the adult loved one who has last wishes. Thus, The Dream Foundation was created in 1994.

To date, The Dream Foundation has fulfilled thousands of wishes for adults battling terminal illnesses including more than 2,500 dreams in 2012.  Rollerson is proud of the foundation’s success – one of the few and longest-operating nonprofit organizations to grant wishes nationwide for terminally ill adults and to not limit the wishes to those with certain diseases (for instance there are other groups who grant wishes for adult cancer patients).

“I had a network of contacts in the Hollywood and film community and I started reaching out to see how others could help and it grew from there,” says Rollerson.

As opposed to the over-the-top wishes we watch Jack Nicholson and Morgan Freeman enjoy in the movie, The Bucket List (such as an African safari, dining in Paris and riding motorcycles along the Great Wall of China) he says his favorite wishes granted are the simple ones.  The Dream Foundation hosted a 104-year-old’s birthday party and invited the dream recipient’s brother whom he had not seen in 40 years.  Another woman had never stayed in a first- class hotel so the foundation gave her a weekend stay at a five-star resort. A 40-year-old man with lung cancer was granted a last wish of a fly fishing trip with his young sons and yet another dream recipient was given a state-of-the-art hearing aid “so he could hear what his grandchildren were saying to him.”

“It’s the simple joys in life we take for granted that become so important as we face ‘the end’,” says Rollerson.  “I learn from each dream we’ve given and it has become a gift to me to give these dreams.”

 

Note:  Read more about end-of-life issues in A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care by Sherri Snelling.

 

©2017 Sherri Snelling

Difference in Caring for Moms versus Dads

moms-and-dadsThe Sandwich Generation is our focus this week. According to Pew Research,  47 percent of Americans  in their 40s and 50s are caring for both children as well as aging parents. While there are many books to help us understand the difference in raising a boy or a girl, there are not a lot of books which talk about the difference between caring for an aging mom versus an older father.

Read our CEO Sherri Snelling’s article for PBS Next Avenue about “The Difference in Caring for Moms versus Dads.”

Holly Robinson Peete Shines as Caregiver Advocate

aarp-caregiving-fair-2016

On November 17, our CEO Sherri Snelling is privileged to be hosting the opening webinar for AARP’s Online Caregiver Fair with Holly Robinson Peete.  Holly and Sherri have both been caregivers for their fathers and Holly is also a caregiver for her son with autism.  

Save the date to join Holly and Sherri on Thursday, November 17 at 11am EST where you can join us and ask us your caregiving questions. Registration is free – go to: aarp.org/familycarefair

Following are excerpts from Sherri’s book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care, including her interview with Holly Robinson Peete. As a TV star, singer, author and co-founder with her husband, NFL star Rodney Peete, of the HollyRod Foundation which helps families of those with Parkinson’s disease and autism, Holly is a true caregiving champ.  

hrp headshotWhen it comes to superstars in this game we call life, Holly Robinson Peete is a top draft pick.  An actress, talk show host, singer, author, passionate advocate, wife and mother, Holly appears to have that perfect existence.  But, even the most perfect pearls are formed by being tossed about in rough seas.

Holly’s perfect life has faced two unforeseen and often devastating blows.  While juggling a thriving acting career, marriage and motherhood, she was also caring long distance for her father who suffered with Parkinson’s disease and simultaneously learned that one of her twins had autism.

The Sandwich Generation of family caregivers – more than 24 million strong according to the National Alliance for Caregiving – is defined as someone who is sandwiched between generational care, caring for a child or children still at home while also providing assistance or full-time care to an older parent.  In Holly’s case, she is Super Sandwich Generation: dealing with a father with a progressive disease of the central nervous system, and raising twins, one who was healthy and active (her daughter Ryan), and the other (son RJ), who was withdrawn and showing the symptoms of a special needs child.

For some people, this double hit would be enough to bring you down before the game even gets started.  But, for Holly Robinson Peete, she learned to fight through to get to the goal line.

From Sesame Street to 21 Jump Street

It was in the 1980s when Holly was still in college at Sarah Lawrence in Bronxville, New York, that her father started showing the early signs of what would be eventually diagnosed as Parkinson’s disease.  He was only 46 years old.

ALotOfHotWaterGordon Sesame StreetHer father, Matthew T. Robinson, Jr. was a producer and also played “Gordon” on the award-winning PBS-TV children’s program Sesame Street in the 1960s and 70s.  In the late 70s and 80s he went on to become one of the most prolific TV screenwriters for shows such as the wildly popular, The Cosby Show.  Just as her father thrived in TV, Holly came by the acting gene naturally.  In the 1980s and 90s, she decided to give acting a go and was riding high on a career that saw her become a breakout TV star on 21 Jump Street alongside a then unknown Johnny Depp followed by her star turn on Hangin’ with Mr. Cooper.  During this time, since Holly’s parents were divorced, it was up to Holly and her brother to support their father as his disease progressed.

It is estimated that one million people are diagnosed with Parkinson’s disease (PD) and each year there are 60,000 new cases in U.S.  This neurodegenerative brain disorder is characterized by a progressive destruction of cells in the central nervous system that reduces supply of dopamine causing nerve cells to fire incorrectly and causing patients to lose control of their normal body movements. While later stages of the disease are devastating, early warning signs can be subtle and progress gradually.  Not every PD patient has the same symptoms. Some experience poor balance and frequent falls, rigidity or muscle stiffness, tremors, and Bradykinesia which is the slowing down or loss of movement (shuffling steps, loss of one arm swing when walking, and difficulty or inability to turn the body).  The most high profile people living with PD today are the actor Michael J. Fox and former world heavyweight boxing champion Muhammad Ali.

holly-and-matthew-robinson-photo“My first reaction to my dad’s diagnosis was ‘what is Parkinson’s’?” says Holly.  As a young college student she raced to the library to find out everything she could about the disease. “I saw two words in the books I read:  neurological and incurable.  I felt helpless and in a dark place and it was hard, this was in a pre-Google period and there was no Michael J. Fox or Muhammad Ali who had raised awareness about Parkinson’s.”

 

 

 

Double Dose of Devastation

While still providing care to her dad, Holly’s career was taking off and so was her love life.  She had fallen for Rodney Peete who had been a superstar college football player at USC and one of the NFL’s best quarterbacks with a 16-year career playing for the Philadelphia Eagles, Washington Redskins, Dallas Cowboys and Carolina Panthers.  They were married in 1995 and two years later Holly was a sought-after actress, NFL wife and new mom to fraternal twins Rodney Jackson and Ryan Elizabeth.

It was at this exciting time for Holly, that life gave her two blows.  Her father’s illness was progressing to a point where he needed around the clock care and Holly and her brother decided he needed to live in a special care facility.   Since Holly lived in Los Angeles and her father was in New York, this made Holly one of the eight million long-distance caregivers.

“The day we moved my dad into the facility was singlehandedly the worst day of my life, to this day I still have regrets about the decision but there really were not a lot of choices,” says Holly with the pain still evident in her voice even though this was almost 10 years ago.  She had her twins, a husband who was on the road for six months out of the year and she was pregnant again.  “The guilt has never really gone away but I don’t hold myself accountable anymore – it was a hard choice but really the only choice.”

holly-and-rj-2016It was during this painful period in Holly’s life that her three-year-old son, RJ, was given a devastating diagnosis:  autism.

“I know it’s a cliché but when we were told about RJ, my life just stopped right there in that doctor’s office,” says Holly.  “I call that day the never day – we were told all the things my beautiful baby boy would never do and at first I felt 10 times more than hopeless.”

Holly recalls how the diagnosis of her son was very different from learning about her dad’s disease.  “Even though my dad was young when he was diagnosed with Parkinson’s, it was totally different to hear that your three-year-old child will never really do anything normal.”

Mars v. Venus

What happened next came out of left field for Holly.  Her husband Rodney had been “my rock while I cared for my dad,” always there to support his wife and the father-in-law who adored him.  But, suddenly with RJ’s diagnosis, Rodney became withdrawn, frustrated and definitely living in denial.

“This was the classic men are from Mars, women are from Venus scenario,” says Holly.  “Men and women just think and do things differently.”

Initially, Rodney was in denial about RJ and as is typical of fathers of special needs children, he distanced himself and was less involved in the daily struggle in part because he was still playing in the NFL which kept him on the road for months.  While it is estimated that 85 percent of parents with special needs children divorce, Holly actually thinks the distance saved their marriage.  “It gave me time to cope on my own without facing Rodney’s different attitude and ideas about RJ,” says Holly.  “Rodney originally thought RJ just needed more discipline, I knew it wasn’t about that at all.”

While Rodney retreated, Holly got to work.  She learned everything she could about autism in the same way she had educated herself about Parkinson’s disease.  Holly learned that autism impairs a person’s ability to communicate and socialize normally with others and often has a physical manifestation of repetitive behaviors.  Statistics showed that one in every 110 children has autism spectrum disorder (ASD) and symptoms can be subtle or significant.  She also learned that there is no cure for autism.

Given little hope by doctors for RJ’s ability to assimilate into normal childhood, Holly refused this dismal outlook for her son and turned to alternative measures.  She found a wonderful autism therapist, she established a gluten-free diet for RJ which had some very positive effects and she brought music into his life which she found soothed her son.  When RJ recorded his first music single, Holly believes it was a way for him to not feel “judged” as he often did during sports or other activities.  She also maintained as normal a life as possible for her other children, which in addition to RJ’s twin sister Ryan now included sons Robinson and Roman.

During this time, Rodney and Holly admit to a lot of foul plays with each other.  In reflection, Holly says, “I wish I had been more patient with Rodney and respectful of his denial but I was too focused on RJ.”  She credits Rodney for coming up with the winning game plan.

“Rodney had that ‘oh my god’ moment when he realized he could lose his family but he chose instead to enter into the fight and save us all.”  Holly said when she and Rodney got the same game plan going, everything changed.  Just a few weeks ago on Valentine’s Day, Holly and Rodney renewed their marriage vows with all four children as their attendants.

Team Peete Scores

Rodney Peete's book on the family's journey with his autistic son.Rodney credits an autism father support group with helping him understand that instead of being dismayed with RJ’s inability to operate in Rodney’s world, Rodney learned to enter RJ’s world.  The result was Rodney’s 2011 book, Not My Boy! A Dad’s Journey with Autism, which he hopes will help other fathers of special needs children who are struggling to understand their situation and create a “new normal.”

Holly co-authored a book for Scholastic with her daughter Ryan who wanted to help other kids learn about her brother’s autism.  The book, My Brother Charlie, gave Ryan a hero’s role in her brother’s daily challenges and won an NAACP Image Award.  And, together Holly and Rodney have built the HollyRod Foundation, originally created to support families facing Parkinson’s to honor her father now expanded to also help families living with autism in recognition of the lessons the Peetes have learned from RJ.

MyBrotherCharlie book cover

 

 

 

same-but-different-book-and-holly-and-kidsIn 2016, Holly collaborated with her twins, RJ and Ryan Elizabeth on the book, Same But Different – Teen Life on th Autism Express.

Her relief from the guilt she says is inevitable for all caregivers comes from the impact of the HollyRod Foundation that helps families just like her family needed answers and hope.  “At some point, you take your guilt and you move on and I did that by paying it forward,” says Holly.  “Knowing that my family can help others and maybe ease their caregiving journey is the best gift of all.”

Spoken like a true superstar.

 

The Peete family with Holly's mom, Dolores Robinson

The Peete family with Holly’s mom, Delores Robinson

Cast of Caregivers Cover FINAL jpegHolly’s story along with other celebrity caregiver journeys are included in Sherri Snelling’s book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care.

 

 

 

 

©2016 Sherri Snelling

AARP Online Family Caregiving Fair – Nov 17

aarp-caregiving-fair-2016

AARP hosted its second annual Family Caregiving Fair online in November, 2016. The online event featured our CEO, Sherri Snelling and caregiving superstar, Holly Robinson Peete. If you missed the live event, you can still watch the Webinar interview by clicking on this link:

“A Caregiving Conversation with Holly Robinson Peete”

Sherri and Holly had a 1-on-1 conversation about Holly’s caregiving role for her father (who had Parkinson’s disease) and her son, RJ, who has autism. Holly shared her challenges, the laughter, the tears, the guilt, the gratitude that all comes with caregiving while Sherri offers expert advice and resources during their “Caregiving Conversation.”

hrp-with-dad-son

 

 

 

February is Heart Health Month

It’s all in the numbers. February is the month we raise awareness for heart disease – the No.1 killer in the U.S. Find out more about how to keep your heart healthy by knowing your numbers. Also, read the Sherri Snelling’s interview with one heart attack survivor who had all the right numbers but forgot to check her family history. And, we offer Sherri’s interview form a Judy Fund event with experts on how heart health and brain health (preventing heart attacks and Alzheimer’s) may be linked.

Know Your Numbers – It Just May Safe Your Life

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

And, watch the Caregiving Club “Me Time Monday” video on heart health:

 

 

Falls Prevention Kicks Off Fall

Sept 22 is the first day of fall kicking off Falls Prevention Awareness Week

Sept 22 is the first day of fall kicking off Falls Prevention Awareness Week

Injuries and health issues from falling are big concerns as we age. In fact, every 28 minutes a senior falls at home. Today, (Sept 22) is the first official day of fall and also the day we kick off the Falls Prevention Awareness Week running through Sept. 28.

Read my article for PBS Next Avenue about a falls prevention movement called Falls Stop, MOVE STRONG –  a great program to keep you moving and prevent falls.

Moving Together to Prevent the Risk of Falls

 

Tom Grubb - Fall Stop, MOVE STRONG student

Tom Grubb – Fall Stop, MOVE STRONG studentBS Next Ave Sept 2016)

Verine Morris - Falls Stop, MOVE STRONG student

Verine Morris – Falls Stop, MOVE STRONG student

TV Icon Norman Lear on Longevity, Laughter & Love for America

Norman.tifAs the TV industry honored itself tonight with the annual Emmy Awards (normally we get excited by these events but woefully tonight was a yawn), we offer something far more entertaining: our CEO Sherri Snelling’s interview with TV icon Norman Lear.

At age 94, Lear is the definition of aging well – which is why we showcase him as part of September’s Healthy Aging Month.

Sherri’s interview with Lear is insightful as he believes laughter is essential to living longer. And, in an era when patriotism is being attacked daily, Lear talks about his love for America and why we all have an obligation to uphold the principles and promise of the Constitution and our Declaration of Independence. For you history buffs, Lear owned one of the few Dunlop broadsides – an original copy of the Declaration of Independence — and toured it around the United States over a dozen years ago so that U.S. citizens, especially younger generations, could see “America’s birth certificate” firsthand.  Now that’s putting on a show!

Along those patriotic lines – we give it a caregiving spin — check out below Sherri’s recommendation for the Caregiver Bill of Rights.

Click here to read Sherri’s interview with Norman Lear for PBS Next Avenue:

Norman Lear – Longevity, Laughter, Love of America

Click here to read Sherri’s article on the Caregiver Bill of Rights for Huffington Post:

Let the Caregiving Movement Begin with the Caregiver Bill of Rights

9/11 Created Heroes and Family Caregivers

sept-11-we-will-never-forget

It’s been 15 years since 9/11 – my generation’s Pearl Harbor and another day in American history that will “live in infamy.”

united-93Many, including myself, are reflecting today on the horror that created heroism out of the ashes of Ground Zero, the Pentagon and the fields in Shanksville, Pennsylvania. (I just watched the amazingly moving film United 93 on the History Channel – thank you for making your programming all day today about remembrance of 9/11).

 

 

But there is another group who deserves our praise and support – a group who had no choice in their role and who were the unwitting recipients of the fall-out of the World Trade Center (WTC) attacks:  caregivers.

Since that beautifully sunny day in New York City 15 years ago, beyond the almost 3,000 families who lost loved ones in the attacks, the dark shadow of death has visited more than 1,000 families.  These were not the more than 3,000 victims trapped inside the burning, collapsing Towers and explosion at the Pentagon or in the downed United 93 airliner – these are the post-9/11 deaths linked to environmental hazards from “the pile” at Ground Zero.

Many of the first responders – those firefighters, police officers, Port Authority officers, sanitation workers and other survivors – who worked endless hours amidst the dust and debris that became the gaping hole in New York’s Wall Street district have since been suffering from respiratory and pulmonary problems, gastrointestinal problems, PTSD and even cancers from the toxic dust cloud that enveloped the city. In 2011, the National Institute of Safety recommended more than 50 types of cancer be covered for 9/11 responders through the World Trade Center Health Program.

According to an ABC News report, “Those who worked at the WTC site seem to be at increased risk of cancer, especially thyroid cancer, melanoma and lymphoma. According to a study released of nearly 10,000 New York firefighters (half of whom worked at the WTC site), those from the site are 32 percent more likely to have cancer.”

You can read my 9/11 15th Anniversary article for PBS Next Avenue here.

Since I view America’s family caregivers as the first responders in the health care and long-term care crisis in this country, here are my thoughts on how to prepare to care in any disaster:

NEW YORK, NY - SEPTEMBER 14: US President George W. Bush (L), standing next to retired firefighter Bob Beckwith, 69, speaks to volunteers and firemen as he surveys the damage at the site of the World Trade Center in New York in this 14 September 2001 file photo. Bush was presented with the same bullhorn he used to address the rescue workers in this photo at a ceremony 25 February 2002 in the Oval Office of the White House in Washington, DC which was attended by Beckwith and New York Governor George Pataki. The President said the bullhorn would be put on display at his father's Presidential Library. (Photo credit should read PAUL RICHARDS/AFP/Getty Images)

(Photo credit: PAUL RICHARDS/AFP/Getty Images)

Never fail to communicate

One of the Monday morning quarterback elements of September 11th was the appalling breakdown of communication between the various agencies established to safeguard our citizens.  Communication breakdown can also occur when you face a family caregiving situation.

Sensitivities to having those uncomfortable conversations about long-term care with your loved one, denial our loved one is ailing or declining, lack of communication or agreement between family members involved can all lead to a lack of unpreparedness.

This puts us in a similar situation as the first responders for 9/11 – dealing with a crisis.  By having the conversation with your loved one and other family members prior to the crisis, you can then have a plan in place to take some of the stress out of the situation and make your caregiving journey Iess fraught with emotional fall-out.

911cover_newsweekCome together

What is so inspiring about the reaction to September 11th was the spirit of Americans to put aside their differences, their selfish needs and care for strangers during a time that connected all of us.

When it comes to caring for a loved one, many caregivers have told me they feel like they are “all alone.”

What 9/11 taught us is we are not alone – we are in this together.  Not only are you one of 65 million caregivers, but there are family, friends, neighbors, co-workers who can help you in your caregiving responsibilities.

Connect with your social network on tasks they can help you with – it will take some of the burden off of your shoulders, help you avoid the typical caregiver “burn-out” and give you the resolve and stamina to continue to care for your loved one.  Two of the online communities that help connect circles of care for caregivers are Lotsa Helping Hands and CaringBridge.  Both sites provide a place for caregivers to receive help from volunteers and post information about their loved one.  Lotsa also has communities dedicated to veterans, Alzheimer’s and other types of caregivers working with more than 50 non-profit partners.

A visitor kisses the memorial wall at Shanksville, PA - site where the first 9/11 Citizen Heroes - the crew and passengers of United Flight 93 -took on their attackers

A visitor kisses the memorial wall at Shanksville, PA – site where the first 9/11 Citizen Heroes – the crew and passengers of United Flight 93 -took on their attackers

Messages of love

One of my favorite movies, Love Actually, opens with a wonderful story about how the terrorists of 9/11 sought to create hatred and divide us when in actuality they brought us together as one nation and one world.  All the messages on 9/11 to friends, family and even the heroes on the plane United Flight 93 to their loved ones before they took on their hijackers – were about love.  Love does have the power to conquer evil – we have seen it firsthand.

 

When it comes to caring for a loved one who is ill, aging or has a disability, there are many feelings:  concern, sadness, confusion, anger, frustration, guilt, helplessness, exhaustion.  What is amazing to me is in the face of all these complicated emotions, the one that stands out, the one that almost all the caregivers I have worked with express is, “I do this out of love.”

There is something rewarding about being a caregiver and the ability to show and give love is one of the most powerful and life-affirming experiences we can experience.

Take time to communicate your message of love and come together with those you care about.  And if you know a family caregiver or anyone touched by September 11 – give them a hug or a call today and just say, “Thanks.”

 

©2016 Sherri Snelling

September is Emergency Preparedness Month

sept-emer-prep-month

Being prepared for caregiving means also knowing the emergency plans to help your older loved one – whether they are “aging in place” at home or live in an assisted living or other facility.

After Hurriance Katrina, a report found 139 nursing home residents died because the facilities did not have the proper disaster plans in place. After Hurricane Sandy hit the tri-state area, many homebound seniors went hungry awaiting emergency meal deliveries. When it comes to natural or manmade disasters, our senior population is among the most vulnerable.

What do you need to know to prepare?

Read our CEO Sherri’s Snelling articles about caregiver emergency preparedness – it will bring you peace of mind when Mother Nature is having a bad day:

Why Caregivers Need to Plan for the Worst – Emergency Preparedness (originally published on PBS Next Avenue)

Combating the Senior Hunger Crisis (originally published on PBS Next Avenue)